Дисертації з теми "End of life care ethical issues"

The overarching purpose of this study was to explore the thoughts and attitudes of hospice chaplains and music therapists (MTs) related to the questions, "Is it appropriate for music therapists to provide spiritual care as part of the hospice team," "What kind of training and preparation do music therapists and chaplains think hospice music therapists should have before engaging in spiritual care work," and "What should the content be of spiritual care training for music therapists?" The study used a sequential exploratory qualitative/quantitative mixed methods design utilizing parallel purposive subject samples to examine the research questions. The first phase of the study included semi-structured interviews with eight music therapists and seven chaplains specializing in hospice care. These interviews were designed to collect in-depth information about the research questions. Each interview was recorded, transcribed, and analyzed using open coding within a grounded theory approach. Thematic analysis revealed the prevalence of the categories of "ethics" and "training." Participants discussed issues related to scope of practice, cultural competence, maintaining personal boundaries, educational content, and educational methods. Analysis of the data information also indicated the need to expand the research questions, which were examined with larger participant samples in the second phase of the study. Phase II of the study included the development and implementation of a survey tool to explore the results of Phase I with a larger group of participants. The following questions were used as the basis for the survey tool: 1) How appropriate do chaplains and music therapists feel it is for music therapists to provide spiritual care as part of the hospice team? 2) What is the scope of practice for music therapists with regards to providing spiritual care as part of the hospice team? 3) How important are specific aspects of cultural competence in providing ethically sound spiritual care to hospice patients? 4) How do music therapists' music selections for addressing spiritual goals reflect culturally competent practice? 5) What are the personal boundaries that should be maintained by music therapists in order to provide ethically sound spiritual care? 6) How do music therapists feel their personal spiritual beliefs influence their interactions with patients? 7) What types of previous spiritual care training do music therapists report completing? 8) What training topics do music therapists and chaplains feel music therapists should study in order to provide competent spiritual care? 9) What types of training methods do music therapists and chaplains think are most appropriate for music therapists wanting to learn more about spiritual care? 10) What, if any, differences exist between chaplains' and music therapists' responses to these research questions? A final sample of music therapists (n=48) and chaplains (n=44) completed the survey. Results indicated that the role of music therapists includes providing spiritual care as part of the hospice team. The spiritual care scope of practice for music therapists identified by survey participants included assisting with spiritual practices, experiencing God or a higher power, assisting with meditative practices, and assisting with guided imagery experiences. According to participants, music therapists should not lead religious rituals or ceremonies, nor should they conduct spiritual assessments. Music therapists felt that all aspects of cultural competence mentioned in the survey were important, especially selecting interventions that are reflective of patients' cultural and spiritual backgrounds. This was also reflected in the ways music therapists wrote about selecting music for use in addressing spiritual goals. Participants identified specific personal boundaries that should be maintained when providing spiritual care, including avoiding pushing one's personal beliefs onto a patient or family. Music therapists expressed a variety of opinions about how their personal beliefs affected their interactions with patients. These varied from "not at all" to "allows me to be open to others." Music therapists and chaplains expressed similarly varied responses to a question about the wearing of religious symbols when providing hospice services. Questions about spiritual care training methods and content revealed that music therapists were more likely to engage in on-the-job learning, or attend continuing education and conference presentations about spiritual care. Music therapists and chaplains also wrote about learning from patients, participating in group feedback sessions, and reading materials about spiritual care as ways to learn about spiritual care provision. Differences were seen between music therapists and chaplains on their understanding of the concept of "spirituality" and "spiritual care." There were also differences between the two groups on questions of the importance of knowing one's own background as a component of cultural competence, as well as the appropriateness of music therapists providing spiritual care/counseling.

Trabalho Complementar apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de Licenciada em Ciências da Nutrição
Objetivo: compreender o conhecimento atual e global relativamente à cessação voluntária de alimentação e nutrição no fim de vida. Metodologia: Revisão da literatura. Resultados: Da literatura consultada emergiram as seguintes temáticas: (1) Definições e terminologia; (2) Motivações; (3) Processo de morte; (4) Comparações entre o suicídio assistido, a eutanásia e a Cessação Voluntária de Alimentação e Hidratação; (5) O papel dos Cuidados Paliativos neste contexto. Conclusões: A cessação voluntária de alimentação e hidratação consiste numa ação de um doente competente, que voluntariamente decide parar de comer e beber com intenção primária de antecipar a morte, devido a uma doença crónica sem possibilidade terapêutica de cura que lhe causa sofrimento intolerável. Contudo, emergem questões éticas relacionadas com esta temática. A literatura aponta que é uma temática ainda controversa dadas as questões éticas que poderão emergir nomeadamente em termos de comparação com o suicídio assistido e a eutanásia. Contudo, por ser uma forma de antecipar a morte considerada confortável e que mantém a autonomia da pessoa doente e não envolve a intervenção dos profissionais de saúde, tem sido a opção mais tomada por doentes em fim de vida mesmo com eutanásia e /ou suicídio assistido legalmente aceites nos seus países de origem.
Aim: to understand the state of the art regarding voluntary stopping of eating and drinking in the end of life. Metodologia: Review of the literature. Resultados: The following themes emerged from the literature: (1) definitions and terminology; (2) Motivations; (3) Process of death; (4) Comparisons between assited suicide, euthanasia and voluntary stopping of eating and drinking; (5) The role of palliative care in this particular context. Conclusions: The voluntary cessation of eating and drinking consists of an action by a competent patient, who voluntarily decides to stop eating and drinking with the primary intention of anticipating death, due to a chronic disease with no therapeutic possibility of cure that causes intolerable suffering. However, the literature points out that it is still a controversial topic given the ethical issues that may arise, particularly in terms of comparison to assisted suicide and euthanasia. However, as it is a way of hastening death that is considered comfortable, that maintains the autonomy of the patient and does not involve the intervention of healthcare professionals, it has been the option most taken by end-of-life patients even when euthanasia and/ or assisted suicide is legally accepted in their countries of origin.
N/A

Background: The US health care system faces increased costs from end of life (EOL) care. The intensive approach to EOL treatment with greater use of procedures in ICUs has led to decedent spending six times greater than that of survivors in the hospital. Experts in ICU and Palliative care fields have called for greater utilization of end of life planning and education. To date, EOL education has been dominated by the technologically driven medical field and the church has been under-utilized. The US population relies on clergy support for many mental health and EOL issues. Clergy report feeling uncomfortable in their ability to provide EOL care and desire more education. Research in clergy preparation for EOL education is relatively small and no studies in Virginia have been completed. Purpose: Document the current state of Richmond, VA, seminary education on EOL issues and document graduating seminarians' desire for more EOL education. Methods: A two-page questionnaire was approved by the VCU IRB and distributed amongst graduating seminarians at the three Richmond Theological Consortium seminaries: Union-PSCE, Baptist Theological Seminary at Richmond, and Virginia Union University Seminary. The first section of the survey evaluated education on EOL issues received while in seminary. Experience with counseling the dying and bereaved along with placement at medical institutions was also evaluated. The second section evaluated the desire for more didactic and practical education. Desire for future Continuing Education Classes was also evaluated along with demographics. SAS was utilized to create frequencies and chi square associations and odds ratios.Results: Overall, 75 surveys were returned, a 35% response rate. Eighty-six percent of respondents stated that pastoral care overall education was covered (missing = 20), while 38.3% stated that medical aspects of dying was covered (missing = 9). Fifty-seven percent had some kind of placement at a medical institution. Sixty-nine percent had experience in an EOL situation. Approximately 75% wanted more education, with practical education and pastoral care predominating. Forty-eight percent desired more theologically-focused EOL continuing education classes. Prior education in preaching sermons and pastoral care of the bereaved was associated with desire for further education in those respective topics, OR = 3.42, 95%CI 1.58, 11.05 and OR = 4.64, 95%CI 1.10, 19.50, respectively. Placement at an institution was associated with desire for more didactic (OR = 3.10, 95%CI 1.03, 9.35) and practical education (OR = 3.89, 95%CI 1.22, 12.35). Experience with counseling the bereaved was associated with a decreased likelihood of wanting more education on how to interact with medical and hospice staff. Demographics were not statistically associated with desire for more education.Conclusions: Several EOL topics do not receive full coverage, specifically self care of the pastor, teaching adults about end of life planning, the medical aspects of end of life, and mobilizing the laity for the care of the dying and bereaved. Placement at an institution or experience was absent in 30-40% of participants. The majority of participants wanted more education. Placement along with previous education was associated with desire for further education. Curriculum change to reflect these findings may benefit in increasing the overall confidence and competence of pastors, increase the ministerial goals of the church, and aid in preparing the public for the end of life, thus decreasing the burden on the health care system.

Thesis advisor: Melissa M. Kelley
Thesis advisor: Lisa Sowle Cahill
Thesis (STL) — Boston College, 2016
Submitted to: Boston College. School of Theology and Ministry
Discipline: Sacred Theology

African Americans’ tendency to choose life-prolonging treatments (LPT) over comfort focused care (CFC) at end-of-life is well documented but poorly understood. There is minimal knowledge about African American (AA) perceptions of decisions to continue or discontinue LPT. The purpose of this study was to examine AA family members’ perceptions of factors that influenced end-of-life care decision-making for a relative who recently died from serious illness. A conceptual framework informed by the literature and the Ottawa Decision Support Framework was developed to guide this study. A retrospective, mixed methods design combined quantitative and qualitative descriptive approaches. Forty-nine bereaved AA family members of AA decedents with serious illness who died between 2 to 6 months prior to enrollment participated in a one-time telephone interview. Outcomes examined include end-of-life treatment decision, decision regret, and decisional conflict. Quantitative data were analyzed using descriptive statistics, independent-sample t-tests, Mann-Whitney U tests, chi-square tests, Spearman and Pearson correlations, and linear and logistic regressions. Qualitative data were analyzed using content analysis and qualitative descriptive methods. Family members’ decisional conflict scores were negatively correlated with their quality of general communication (rs = -.503, p = .000) and end-of-life communication scores (rs = -.414, p = .003). There was a significant difference in decisional regret scores between family members of decedents who received CFC versus those who received LPT (p = .030). Family members’ quality of general communication (p = .030) and end-of-life communication (p = .014) were significant predictors of family members’ decisional conflict scores. Qualitative themes related to AA family members’ experiences in end-of-life decision-making included understanding (e.g., feeling prepared or unprepared for death), relationships with healthcare providers (e.g., being shown care, distrust) and the quality of communication (e.g., being informed, openness, and inadequate information). Additional qualitative themes were related to perceptions of the decision to continue LPT (e.g., a lack of understanding, believe will benefit) or discontinue LPT (e.g., patient preferences, desire to prevent suffering). In conclusion, this study generated new knowledge of the factors that influenced AA bereaved family members’ end-of-life decision-making for decedents with serious illnesses. Directions for future research were identified.

Background: In the background section the following terms are described: Palliative care and holistic view, care at the end-of-life, ethical problems in the end-of-life care and ethical problem and ethical dilemma. Aim: The purpose of this literature review was to describe nurses’ experiences of ethical problems in the end-of-life care of patients. Method: A literature review was selected as a method in this study based on eightscientific articles. Articles were reviewed and analyzed critically by the author. Travelbees’ theory (1971) “human- to- human relationships” was selected as a theoretical basis. Results: The result presents six themes as follows: Decision-making, ineffective treatments and therapies, insufficient communication, the lack of cooperation, inadequate respect for patient’s autonomy and uncertainty in caring role. These themes present how nurses deal with end-of-life care and in which situations ethical problems arise. Discussions: The result was discussed in relation to Travelbees’ theory (1971) “human-to-human relationships”. Nurses’ different experiences according to their different responsibilities such as insufficient communication and cooperation, decision-making processes, uncertainty in caring role and inadequate respect for patients’ autonomy were discussed.
Bakgrund: I bakgrunden beskrivs följande termer: Palliativ vård och holistiskt synsätt, vård vid livets slutskede, etiska problem i livets slutskede och definitionerna av etiskt problem och etiskt dilemma. Syfte: Syftet med denna litteraturöversikt var att beskriva sjuksköterskors upplevelser av etiska problem i vården av patienter i livets slutskede. Metod: En litteraturöversikt valdes som metod i denna studie som bygger på åtta vetenskapliga artiklar. Artiklarna granskades och analyserades av författaren. Travelbees teori (1971) “human-to-human relationships” valdes som en teoretisk grund. Resultat: Resultatet presenterar sex teman enligt följande: Beslutsfattande, ineffektiva behandlingar och terapier, otillräcklig kommunikation, bristande samarbete, otillräcklig respekt för patientens autonomi och osäkerhet i vårdande roll. Dessa teman presenterar hur sjuksköterskor hanterar vård vid livets slutskede och i vilka situationer etiska problem uppstår. Diskussion: Resultatet diskuterades utifrånTravelbees’ theory (1971) “human- to- human relationships”. Sjuksköterskors olika erfarenheter i enlighet med deras olika ansvarsområden såsom otillräcklig kommunikation och samarbete, beslutsprocesser, osäkerheten i vårdanderoll och bristande respekt för patientens autonomi diskuterades.

Thesis (MPhil)--University of Stellenbosch, 2004.
ENGLISH ABSTRACT: This thesis discusses the value of medical futility as an action guide for neonatal endof- life decisions. The concept is contextualized within the narrative of medical progress, the uncertainty of medical prognostication and the difficulty of just resource allocation, within the unique African situation where children are worse off today than they were at the beginning of the last century. parties actively engage in an interactive deliberation for a plan of action. Both parties ought to accept moral responsibility. Such a model of deliberation has the added advantage of transcending the limitations of the participants to arrive at a higher-level solution, which is considered more than just a consensus. It has been argued that medical progress has obscured the basic need for human compassion for the dying and for their loved ones. The literature furthermore reports that the quality of end-of-life care is unsatisfactory for both patients and their families. It is within this context that the concept of medical futility is positioned as a useful action guide. As we do not have the luxury of withdrawing from the responsibility to engage in the deliberation of end-of-life decisions, such responsibility demands an increasing awareness of ethical dilemmas and a model of medical training where communication, conflict-resolution, inclusive history taking, with assessment of patient values and preferences, is focussed on. The capacity for empathetic care has to be emphasized as an integral part of such approach. Finally, in this thesis, the concept of medical futility is tested and applied to clinical case scenarios. It is argued that the traditional medical paradigm, with its justification of an 'all out war' against disease and death, in order to achieve utopia for all, is outdated. Death in the neonatal intensive care unit is increasingly attributed to end-of-life decisions. Futile treatment could be considered a waste of scarce resources, contradicting the principle of nonmaleficence and justice, particularly in an African context. The ongoing confidence in, and uncritical submission to the technological progress in medicine is understood as a defence and coping mechanism against the backdrop of the experience of life's fragility, suffering and the inevitability of death. Such uncritical acceptance of the technological imperative could lead to a harmful fallacy that cure is effected by prolonging life at all cost. What actually occurs, instead, is the prolongation of the dying process, increasing suffering for all parties involved. The historical development of the concept of medical futility is discussed, highlighting its applicability to the paradigmatic scenario of cardio-pulmonary resuscitation. Particular attention is given to ways in which the concept could endanger patient-autonomy by allowing physicians to make unilateral, paternalistic decisions. It is argued that the informative model of the patient-physician relationship, where the physician's role is to disclose information in order for the patient to indicate her preferences, ought to be replaced by a more adequate deliberative model, where both
AFRIKAANSE OPSOMMING: Hierdie tesis bespreek die waarde van mediese futiliteit as 'n maatstaf vir aksie in gevalle van neonatale 'einde-van-lewe' besluite. Die konsep word gekontekstualiseer binne die wêreldbeskouing van mediese vooruitgang, die onsekerheid van mediese prognostikering en die probleme wat geassosieer IS met regverdige hulpbrontoekenning; spesifiek binne die unieke Afrika-situasie. Dit word aangevoer dat die tradisionele mediese paradigma, met regverdiging vir voorkoming van siekte en dood ten alle koste, verouderd is. Sterftes in neonatale intensiewe sorgeenhede word toenemend toegeskryf aan 'einde-van-lewe' besluite Futiele behandeling sou dus beskou kon word as 'n vermorsing van skaars hulpbronne, wat teenstrydig sou wees met die beginsels nie-skadelikheid ('nonmaleficence') en regverdigheid. Die volgehoue vertroue in en onkritiese aanvaarding van aansprake op tegnologiese vooruitgang lil geneeskunde, kan beskou word as verdediging- en hanteringsmeganisme in die belewenis van lewenskwesbaarheid, lyding en die onafwendbaarheid van die dood. Sodanige onkritiese aanvaarding van die tegnologiese imperatief kan tot 'n onverantwoordbare denkfout, naamlik dat genesing plaasvind deur verlenging van lewe ten alle koste, lei. Wat hierteenoor eerder mag plaasvind, is 'n verlenging die sterwensproses en, gepaard daarmee, toenemende lyding van all betrokke partye. Die historiese ontwikkeling van die konsep van mediese futiliteit word bespreek met klem op die toepaslikheid daarvan op die paradigmatiese situasie van kardiopulmonêre resussitasie. Spesifieke aandag word gegee aan maniere waarop die konsep pasiënte se outonomie in gevaar stel, deur die betrokke medici die reg te gee tot eensydige, paternalistiese besluitneming. Die argument is dan dat die informatiewe model, waar die verhouding tussen die dokter en pasiënt gebasseer is op die beginsel dat die dokter inligting moet verskaf aan die pasiënt sodat die pasiënt 'n ingeligte besluit kan neem, vervang moet word met 'n meer toepaslike beraadslagende model, waar sowel die dokter as die pasiënt aktief deelneem aan interaktiewe beraadslaging oor 'n aksieplan. Albei partye word dan moreel verantwoordbaar. So 'n model van beraadslaging het die bykomende voordeel dat dit die beperkings van die deelnemers kan transendeer. Sodoende word 'n hoër-vlak oplossing - iets meer as 'n blote consensus - te weeg gebring. Die argument word ontwikkel dat mediese vooruitgang meelewing met die sterwendes en hul geliefdes mag verberg. Verder dui die literatuur daarop dat die kwaliteit van einde-van-lewe-sorg vir sowel die pasiënte as hul familie onaanvaarbaar is. Dit is binne hierdie konteks dat die konsep van mediese futiliteit kan dien as 'n maatstaf vir aksie. Medici kan nie verantwoordelikheid vir deelname aan beraadslaging rondom eindevan- lewe beluitneming vermy nie, en as sodanig vereis die situasie toenemende bewustheid van sowel die etiese dilemmas as 'n mediese opleidingsmodel waann kommunikasie, konflikhantering, omvattende geskiedenis-neming, met insluiting van die pasient se waardes en voorkeure, beklemtoon word. Die kapasiteit vir empatiese sorg moet weer eens beklemtoon word as 'n integrale deel van hierdie benadering. Ten slotte, hierdie tesis poog om die konsep van mediese futiliteit te toets en toe te pas op kliniese situasies.

The purpose this study was to explore the relationship between counseling mental health practitioners’ attitudes toward euthanasia and their ethical decision making levels when confronted with clients facing end-of-life concerns. A review of literature indicated a series of complex ethical, moral, and societal issues surrounding clients’ right-to-die issues. Because of the lack of research in the counseling field and the growing prevalence of right-to-die issues with clients who have a diagnosis of a terminal illness, more research in the counseling field is needed (Hadjistavropoulos, 1996; Winograd, 2012). Participants for the present study were recruited from six state divisions of the American Counseling Association; Alabama, Louisiana, North Dakota, Maryland, Vermont, and Utah. Two multiple regressions were conducted in addition to one correlation and one MANOVA. One multiple regression was conducted using EDMS-R ans the dependent variable and one multiple regression was conducted using ATE overall score as the dependent variable. The Independent variables used were years in practice, gender, state, and religion. The dependent variables used were participant EDMS-R score and participant ATE score. Variables were chosen to examine variability accounted for in ATE and EDMS-R participant scores. Findings from this small study indicated that counselors’ years in practice, gender, state, and religion accounted for more of the variability in their beliefs about euthanasia (13.5) than their ethical decision making levels (2.7). Also, counselors’ religion had the greatest effect on participants’ ATE overall scores and on their EDMS-R P index scores. Counselors’ ATE overall scores as well as their both active and passive scores were all shown to be correlated to their P index scores with their ATE active scores exhibiting the strongest correlation and their ATE passive score exhibiting the weakest correlation. Future research suggestions include assessing counselors’ religion in more depth, and focusing on the other demographic variables in the study, as well as conducting an initial qualitative study to provide insight from individual participants as opposed to assessing a large group of participants.

Professional nurses working in an intensive care unit (ICU) are faced with the death of critically ill patients frequently. Modern day medicine and technology have made it possible for advanced life-sustaining measures to be implemented on patients who, without medical intervention, would otherwise not have survived. The question is raised: is modern technology preserving life and prolonging the dying process, or is it in the best interest of the patient for treatment to be withdrawn? Nurses, caring for these patients and their families, are practicing at the bedside of these dying patients and are thus often faced with end-of-life issues, particularly withdrawal of treatment. The primary functions of critical care nurses are toward their patients. Physicians are responsible for making decisions regarding withdrawal of treatment. However, the nurses in the ICU are responsible for implementing the decisions made; sometimes contradicting what they believe in. The experience of end-of-life issues, namely withdrawal of treatment, is a cause of distress for the professional nurse. Little research has been done on how the ICU nurses deal with end-of-life issues and what support structures are required to assist nurses in dealing with end-of-life issues (Hov, Hedelin & Athlin, 2006:204) The objectives of the study were to explore and describe the professional nurses‟ lived experiences of end-of-life issues in the intensive care unit. The study aimed to make recommendations regarding support strategies to assist professional nurses in dealing with end-of-life issues in the intensive care unit. The researcher has selected a qualitative research approach with an explorative, descriptive and contextual design in order to conduct the study. Data was collected by means of semi-structured interviews. Data was analysed using the steps as illustrated by Tesch‟s method. Ethical principles were maintained throughout the research study. The findings of this study are to be presented in a journal publication.

The alleviation of suffering lies at the core of compassionate end-of-life care, yet little is known about the lived experience of suffering. Motivated by a series of reports on poor care of older people in hospital, this study addresses suffering in older people at the end of life in an acute hospital ward in the United Kingdom. Methods were developed from a synthesis of ethnographic fieldwork and phenomenological interpretation. Data were collected using participant observation on an acute care ward for older people in a hospital in Northern England, over 186 hours between June and August 2015. Data included field notes, documents, photographs and informal interviewing. Staff and patient participants were identified using theoretical sampling. Data were analysed using a hermeneutic approach involving a continuous process of analysis, further data collection, posing of problems and questions, and interpretation. This cyclical approach to the data enabled the development of interpretive perspectives which could then be further explored in the field. Findings suggested that care for older people was shaped by competing ideologies of care and organisational regulatory processes. Particularly when there was ambiguity regarding prognosis, there was a tendency for care to default to a ‘rescuing’ acute care model. Through exploring the experiences of individual patients and placing these in the context of cultures of care, I suggest that iatrogenic suffering was a significant concern that often went unrecognised. Patient-centred goals must be more focused upon avoidance of iatrogenic suffering. Recommendations include innovations in clinical education and multiprofessional working.

Thesis advisor: Pamela J. Grace
As supported by extensive literature, nurses have a role to play in helping patients and families in getting their needs understood and met. This ethical responsibility includes decisions made by nurses in the context of end-of-life (EOL) care. Ethical decision-making is known to be influenced by nurses' understanding of their professional accountability and several cognitive processes that underlie moral action. Rest (1986) theorized these processes as: moral sensitivity, judgment, moral motivation, and moral character. However, few instruments have been developed to understand nurses' ethical decision-making during EOL care, and most have focused on a single dimension rather than on the multi-dimensional process. The purposes of this methodological study were: 1) to develop a scale with content domains and items capable of describing Korean nurses' ethical decision-making at EOL and 2) to evaluate the scale's psychometric properties using Korean nurses (N = 230). The criteria for participation were: Korean nurses having more than 2 years of clinical experience in the types of units where most Korean patients spend the end of their lives: critical care, general medical-surgical, and hospice units. The process followed two steps. Phase I consisted of the development of domains and items. Three domains were identified through themes derived from an integrated review of relevant literature and the findings from a preliminary qualitative study involving experts in EOL care in Korea. 95 items were generated within these three domains. Content validation was completed by a panel of six nursing ethics experts, three in Korea and three in the U.S. Next, a pilot study to test readability was conducted using three Korean nurses. During Phase II, 67 items of the NEDM-EOLCS version 3.0 were tested. After item analysis and factor analysis, a 55-item final version of the NEDM-EOLCS was established. The total scale and three subscales reported good reliability and validity. The three subscales were labeled: "perceived professional accountability," "moral reasoning and moral agency," and "moral practice at the EOL."
Thesis (PhD) — Boston College, 2009
Submitted to: Boston College. Connell School of Nursing
Discipline: Nursing

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Individuals who are facing death today are doing so in an environment that is significantly different than it was in the past. Medical technology is increasingly able to keep people alive even with multiple complex chronic conditions. While these advances in medicine are beneficial to many, it can also unnecessarily prolong inevitable deaths. Concerns over the ability to have a death that is in alignment with personal values has increased the interest in the use of formal end-of-life planning including writing an advance instructional directive and assigning a durable power of attorney for health care. Although research has indicated that the use of these formal planning strategies is beneficial, not everyone completes them. Using a current nationally representative sample, the three specific aims of this study were to examine whether there are racial and ethnic differences in formal end-of-life planning done by older African American, Hispanic, and White adults; to examine socioeconomic factors including education and income in formal end-of-life planning as well as assess the contribution of these factors in explaining racial and ethnic differences in formal end-of-life planning; and to examine the role of religiosity in formal end-of-life planning and to assess its influence on racial and ethnic differences in explaining formal end-of-life planning. Logistic regression was run on data from the Health and Retirement Study (HRS) in order to analyze the completion of formal end-of-life plans by African American, Hispanic, and White decedents. Exit interviews conducted with knowledgeable proxies in 2008 or 2010 were combined with data from earlier waves of the HRS survey in order to analyze the completion of formal end-of-life plans, race and ethnicity, socioeconomic status, and religion. Both Blacks and Hispanics were less likely to complete a written advance directive, assign a proxy, or complete both forms of formal planning than were Whites. Group differences remained after controlling for region of death and cause of death. Both Blacks and Hispanics were less likely to complete any form of formal planning than Whites. Group differences remained after additionally controlling for gender, age, marital status, whether the decedent had children, income, education, religious preference, importance of religion, and frequency of attending religious services. Higher levels of income and education both increased the odds that formal advance planning would take place. Religious preference was not significant, but decedents who had stated that religion was very important were less likely to plan while those that attended services frequently were more likely to plan. I speculate that the role of cultural capital may partially explain the persistent racial and ethnic disparities and the importance of income and education. Additionally the dominant religious doctrines of Christianity may have a greater influence than the different religious teachings of Protestant and Catholics around end-of-life medical care. Contrary to expected findings, reference groups of those who attend religious services frequently may assist in formal planning. These finding may help guide interventions that can diminish disparities in the end-of-life experience. Understanding who are completing formal plans can help ensure end-of-life care that is in alignment with personal beliefs and values.

There is an identified problem with patients receiving suboptimal pain management at a hospice agency in the northwestern United States. At this agency, undertreatment of pain is prevalent. Evidence indicates that this may be a result of a lack of guidelines, education, and knowledge of appropriate prescribing. Known barriers to the correct prescription and administration of potent opioids in the hospice setting include prevailing beliefs, knowledge, skills, and attitudes, all of which can impact care negatively. Contextually, hospice principles mandate patient comfort and caregiver involvement in continuous quality improvement, which includes adequate and informed pain management. Moreover, hospice metrics demand requisite knowledge, skills, and attitudes for optimal care, including pain management at the end of life. The Academic Center for Evidence-Based Practice (ACE) star model was used to guide the development of an evidence-based, guideline-supported educational program that will improve pain management at the hospice agency when implemented. The purpose of this project was to use transdisciplinary expertise and team collaboration to develop the program and then to conduct a formative and summative evaluation utilizing experts to prepare the guidelines and process for implementation. Ten experts reviewed the guideline, the educational materials, the process, and the evaluation plan and conducted reviews using the AGREE II tool. The panel of experts agreed within the 6 AGREE domains. Future implementation of this guideline, translation process, and evaluation tool will impact social change through the empowerment of the clinical staff, patients, and caregivers to provide the best pain control and comfort at end of life, a vulnerable time for all patients.

The aim of this thesis has been to map the ethical journey of experienced nurses now practising in rural and remote hospitals in central and south-west Queensland and in domiciliary services in Brisbane. One group of the experienced nurses in the study were Directors of Nursing in rural and remote hospitals. These nurses were “hands on”, “multi-skilled “ nurses who also had the task of managing the hospital. Also there were two Directors of Nursing from domiciliary services in Brisbane. A grounded theory method was used. The nurses were interviewed and the data retrieved from the interviews was coded, categorised and from these categories a conceptual framework was generated. The literature which dealt with the subject of ethical decision making and nurses also became part of the data. The study revealed that all these nurses experienced moral distress as they made ethical decisions. The decision making categories revealed in the data were: the area of financial management; issues as end of life approaches; allowing to die with dignity; emergency decisions; experience of unexpected death; the dilemma of providing care in very difficult circumstances. These categories were divided into two chapters: the category related to administrative and financial constraints and categories dealing with ethical issues in clinical settings. A further chapter discussed the overarching category of coping with moral distress. These experienced nurses suffered moral distress as they made ethical decisions, confirming many instances of moral distress in ethical decision making documented in the literature to date. Significantly, the nurses in their interviews never mentioned the ethical principles used in bioethics as an influence in their decision making. Only one referred to lectures on ethics as being an influence in her thinking. As they described their ethical problems and how they worked through them, they drew on their own previous experience rather than any knowledge of ethics gained from nursing education. They were concerned for their patients, they spoke from a caring responsibility towards their patients, but they were also concerned for justice for their patients. This study demonstrates that these nurses operated from the ethic of care, tempered with the ethic of responsibility as well as a concern for justice for their patients. Reflection on professional experience, rather than formal ethics education and training, was the primary influence on their ethical decision making.

碩士
臺北醫學大學
護理學研究所
97
“Hospice-Palliative Care Act” was approved on June 7, 2000.The purpose of this study is to explore the status of the implementation of advance directives, Living Will, durable power of attorney for health care (DPAHC), the legal and ethical issues of advance directives, and push the development of Communication skills and advance directives implementation of the Guidelines. Design: The study is an exploratory and descriptive study. Methods: Investigates death medical records and questionnaires. Using independent t-test, χ2, pearson correlation & Binary logistic regression analysis data. Results: Signing the consent form, the will of consent of do not resuscitation (DNR) is the majority (86.8%). Consent to the proposed signing of a key person to the most physicians (71.5%). The relationship between the people signed up, most children of the majority (61.6 %). At the time of signing, the patient unconscious awareness of the maximum (36.8%), signed reasons for the dying of the majority (78.8%). The result of questionnaire survey, the correct choice will or of DNR is low, and total total experience of advance directives scores and total con- fidences is low. Regiona and “the information in disease and advance directives usually is sufficient to guide treatment” could be used as predictive factors for advance directives in the patient group. Self-perceived physical health status and “have you been a witness for an advance directive” the could be used as predictive factors for advance directives in the family group. Whether in the hospice ward , Knowledge score of “Hospice-Palliative Care Act”, “have you been a witness for an advance directive” and “the information in disease and advance directives usually is sufficient to guide treatment” could be used as predictive factors for advance directives in the nurses group.Finally suggest: development of communication skills and advance directives or DPAHC implementation of the Guidelines.

This thesis follows the everyday movements of a group of elderly Australians, to critically examine how they came to experience a sense of home while living with bodily and cognitive impairments in a nursing home. In tracing their steps and the minutiae of their day-to-day activities, this research illustrates how nursing home residents experience ‘home’ as a sense of ‘rightness’ of being through doing the most mundane activities of walking, transferring position and eating. Examining care through the lens of home, I analyse how home, bodies and movement are reconfigured through multiple contexts of care. I argue that it is only in constellations of care that produce movements that residents attempt to make, but are unable to make on their own, that the potential to become at home is made possible. Based on 12 months of fieldwork in two nursing homes in metropolitan Adelaide, South Australia, this research attends closely to the sensory extensions (Dennis 2007) and restrictions of residents’ bodies vis-à-vis their engagements with other people and things. From the taste of a home cooked meal, to the touch of staff and family members, medications, handrails, carpeted floors and walking aids, residents’ ageing and declining bodies respond to, and may resist, assistance to walk, stand or eat. Care plans, staff and equipment, as this thesis will show, can also restrain residents’ bodies, inhibiting their movements and their becoming at home. This thesis draws on Deleuze and Guattari’s (1977, 1988) theories of becoming and desiring production to expand Jackson’s notion of home (1995, 2002) and ‘existential imperative’ (2002, p. 14) to propose that home is a matter of becoming-at-home-in-the-world. Key to my argument is how residents experience an innermost drive to move, and in examining how their urge to move is responded to, I demonstrate the multiple and at times contested forces that can propel residents to sit, to stand, or to put one foot ahead of the other. It is through this Deleuzian approach that I detail the multiple persons and things that enact and produce assemblages (Deleuze & Guattari 1988) of care. In so doing, I demonstrate that an ethically responsive care, or the care that was communicated and experienced as ‘right’ by residents, requires tinkering (Mol, Moser & Pols 2010) to achieve a balance between inclusion and autonomy (Rapport 2018). From moment to moment, and day-to-day, as bodies age, decline and eventually die, each resident requires different assemblages of care to move and to become at home. Examining the varieties of experience for nursing home residents through the theoretical lens of becoming at-home-in-the-world, this thesis provides new knowledge about the interrelations between movement and care, and the generative and productive affects of walking, standing and eating in residents’ lives. I argue that this ethnographically informed understanding of the sensibilities and potentialities of movement presents a challenge to clinical constructions of bodily and cognitive impairment and is at odds with aged care discourses and practices that may render the lives of nursing home residents inactive or meaningless and thus further constrain their existential and bodily potentials.
Thesis (Ph.D.) -- University of Adelaide, School of Social Sciences, 2020

博士
國立陽明大學
護理學系
106
The modern medicine field in the intensive care unit (ICU) is geared by advanced technologies, which mainly aim at disease management leading to maintain the patients’ lives. In this kind of modernized technology-driven medical workplace, to provide end-of-life (EOL) care create a complicated phenomenon and experience. To explore and analyze the process experienced by ICU nurses who provide EOL care turns out to be the main theme of this study. This study was conducted by using interpretative phenomenological qualitative research method to analyze the data drawn from twelve sessions of group dialogues among 13 registered ICU nurses who provided EOL care. Data was gathered from digitally recorded group dialogues and then analyzed alone with the researcher's diaries and participants' feedback sheets. Interestingly, although the ICU nurses provided nursing care using advanced medical devices, meanwhile they may actually get a chance to reconstruct themselves and then turn to ethical selves through the process during providing EOL care. The process can be further divided into three parts including: (1) falling into the suffering, (2) compassion from suffering with, and (3) the oneness of mind and body. Nursing care is actually the ethical action which presented by which the very nurses giving care. It can’t be simplified as or framed by the general goals of medical care driven by guideline recommendations. ICU nurses participate in the medical managements, witness the sufferings, and then generate compassion leading themselves to exercise their body and mind to care patients. Through the practice repeatedly, nurses gain a new understanding and consequently transform themselves to be an ethical self which proactive in giving EOL care to meet the profound beauty behind the nursing work.

This study was conducted using a qualitative descriptive approach. It was based on an analysis that was done to determine awareness and attitude of patients in end of life issues. The semi-structured interviews were conducted for data collection. A sample of ten patients, five inpatient and five outpatient, was purposively chosen. Permission was obtained from the hospital superintendent and heads of departments, and also consent from patients, for the study. Data was analyzed, using the NVIVO program, a computer software, for data coding, and a conceptual model for categorization. From the findings, the researcher concluded that poor communication causes lack of knowledge in patients, which in turn limits the capacity for decision making in patients. The researcher also noted that participants were not aware of their autonomy in decision-making.
Thesis (M.Cur.)-University of Natal, Durban, 2002.

研究背景: 居住於安老院舍的長者通常患有多種不可逆轉的慢性疾病或未期病症。相對其他組群，他們將更快面對臨終與死亡的問題。因此，了解他們對「臨終問題」的態度、臨終地方的選擇意向及其預測因素是非常重要的。研究所得資將有助提供優質的“善終“服務予這群弱勢的長者。
研究目的: 本研究旨在探討有關居於香港安老院舍的長者對「臨終問題」的態度、臨終地方的選擇意向、是否視安老院舍如同自己的家及其預測因素。
研究方法: 本研究採用橫斷面量性研究的方法，以便利抽樣方式在香港不同地區的安老院舍進行研究。研究對象為年齡65歲或以上，及簡短智能測試達6分或以上，並能以廣東話溝通的安老院舍長者。研究採用結構性問卷以面對面訪談形式進行，作者把「對臨終問題的態度調查問卷」翻譯成中文版本用作調查長者對臨終問題的態度。並採用EQ-5D和Barthel Index (20) 以評估長者的自我健康評估及日常生活自我照顧能的狀況。調查問卷亦包括探討長者對安老院視為自己的家的看法和死亡地點的選擇。收集之數據採用了二分類邏輯回歸進行各因素與結果變量之間的單因關聯分析，那些p值<0.25的因素被選定為候選自變量，然後利用逐步多因素邏輯回歸分析來劃定結果變量的獨立相關因素。
研究結果: 合共317名來自20間安老院舍的長者參與了此項研究，包括248名女性(78.2%)和69名男性(21.8%)，年齡介乎65至99歲，平均年齡為84歲(標準差6.6)。多因素分析顯示多種預測因素與「臨終問題」的態度有著相關性；對於有家庭財政支持的長者來說，他們較傾向不同意由醫生作出所有有關照顧上的決定；有接受教育和患有較多慢性病的長者較傾向同意訂立預前指示；那些在安老院舍居住時間較長的長者較傾向不同意使用藥物讓他們可以隨時選擇結束生命；但患有糖尿病者較傾向同意安樂死；有宗教信仰者較傾向同意靈性或宗教的支持對他們是重要的。此外，310名安老院舍長者(97.8%)認為安老院舍如同自己的家。有261名長者 (68.1%) 表示希望在目前的安老院去世。那些認為安老院舍如同自己的家、有獨立經濟支持、及同意安樂死的院舍長者，較傾向希望在目前的安老院去世。
研究結論: 本研究譂述了居於香港安老院舍的長者對「臨終問題」的態度及其相關因素的實證結果。研究發現幾乎所有安老院舍的長者視安老院舍如同自己的家，明顯地相當多的長者表示如果條件允許下，希望在目前的安老院舍去世。這種強烈的聲音指出我們需要發展院舍的臨終照顧以滿足院舍長者的需要及期望。而從獲悉長者對「臨終問題」的態度及臨終地方的選擇意向，可讓醫護專業人員在安老院舍裡更有效地規劃臨終照顧服務，並能讓長者善終與好死。
Background: Older people living in residential care homes for the elderly (RCHEs) have high incidences of irreversible chronic illnesses and terminal diseases. They are the most significant group facing impending death and dying. It is vital to understand their attitudes toward end of life (EOL) issues and their preference for EOL care in order to promote their quality of life.
Objective: This study aims to examine the attitudes toward EOL issues, the preference for place of death, the perception of RCHE as a resident’s own home and their predictors amongst older RCHE residents in Hong Kong.
Method: A cross-sectional quantitative study with convenience sampling was conducted in RCHE in different regions of Hong Kong. RCHE residents aged ≥65 achieving abbreviated mental test score ≥6 and who were able to communicate in Cantonese were recruited. Face-to-face interviews were conducted with the aid of a structured questionnaire. Demographic and clinical characteristics were collected. Health and functional status were measured by Euroqol-5D and Barthel Index (20). The “Attitudes of older people to end of life issues questionnaire“ was translated from the English version into a Chinese version and employed to examine the attitudes toward EOL issues. The perception of RCHE as own home and the preference for place of death were examined. Univariate analysis on the association between the outcome variables was performed. Factors with a p value <0.25 in univariate analyses were selected for multivariable logistic regression to delineate factors independently associated with the outcome.
Results: A total of 317 participants including 248 (78.2%) women and 69 (21.8%) men from 20 RCHE participated in the study. Their mean age was 84 ± 6.6 (mean ± SD). As showed in multivariate analysis, respondents financially supported by their family were less likely to allow doctors to make all the decisions about their care. Those respondents with higher number of morbidities and had higher education were more likely to agree with making a living will. Those who lived longer in RCHE were less likely to agree to having a drug at their disposal to end their life. Respondents with diabetic mellitus were more likely to agree with euthanasia. Respondents who followed a religion were more likely to agree on the importance of spiritual or religious support. Furthermore, 310 (97.8%) respondents perceived RCHE as their own home. Two hundred and sixteen (68.1%) residents wished to die in their present RCHE. Residents with the means to support themselves financially, agreed with euthanasia and who perceived RCHE as their own home were more likely to wish to die in RCHEs.
Conclusion: Nearly all residents perceived RCHEs as their own home and a significant proportion wished to die there if conditions allowed. This asserts that EOL care in RCHE should be developed to meet the wishes of the older residents. This study delineated significant factors associated with the attitudes of older people toward EOL issues. Knowing those factors allows health care professionals to plan for quality EOL care services in RCHEs more effectively and foster good death for this vulnerable population.
Detailed summary in vernacular field only.
Detailed summary in vernacular field only.
Detailed summary in vernacular field only.
Detailed summary in vernacular field only.
Detailed summary in vernacular field only.
Law, Po Ka.
Thesis (D.Nurs.)--Chinese University of Hong Kong, 2013.
Includes bibliographical references (leaves 160-173).
Abstracts also in Chinese; appendixes includes Chinese.
Chapter 1. --- CHAPTER ONE: INTRODUCTION AND BACKGROUND
Chapter 1.1 --- Introduction --- p.1
Chapter 1.2 --- Epidemiology data of ageing in Hong Kong --- p.3
Chapter 1.3 --- Impact of ageing population --- p.4
Chapter 1.4 --- Residential care services in Hong Kong --- p.5
Chapter 1.5 --- Quality of residential care homes for the elderly (RCHEs) in Hong Kong --- p.7
Chapter 1.6 --- Definition of end of life care, palliative care and hospice care --- p.9
Chapter 1.7 --- End of life care in residential care homes in Hong Kong --- p.11
Chapter 1.8 --- Dying in place --- p.14
Chapter 1.9 --- Perception of RCHEs as own home --- p.15
Chapter 1.10 --- Factors influencing attitudes to end of life issues --- p.15
Chapter 1.11 --- The proposed framework --- p.18
Chapter 1.12 --- Aim of the study --- p.20
Chapter 1.13 --- Operational definitions of key terms --- p.20
Chapter 1.14 --- Significance of the study and its impact on the society and future service development --- p.22
Chapter 1.15 --- Overview of each chapter of the thesis --- p.24
Chapter 2. --- CHAPTER TWO: LITERATURE REVIEW
Chapter 2.1 --- Introduction --- p.25
Chapter 2.2 --- Literature search --- p.26
Chapter 2.3 --- Search results --- p.27
Chapter 2.4 --- Unmet need for end of life care in RCHEs in Hong Kong --- p.28
Chapter 2.5 --- EOL care in RCHEs of other Western and Asian countries --- p.33
Chapter 2.6 --- Preference for place of death --- p.34
Chapter 2.7 --- Attitudes toward end of life issues --- p.38
Chapter 2.8 --- Factors affecting older residents when choosing to die in RCHEs --- p.41
Chapter 2.9 --- Barriers to EOL care in RCHEs --- p.43
Chapter 2.10 --- Conclusion --- p.45
Chapter 3. --- CHAPTER THREE: RESEARCH DESIGN AND METHOD
Chapter 3.1 --- Introduction --- p.47
Chapter 3.2 --- Aim of the study --- p.47
Chapter 3.3 --- Objectives of the study --- p.47
Chapter 3.4 --- Research questions --- p.48
Chapter 3.5 --- Research design --- p.50
Chapter 3.6 --- Sample size --- p.51
Chapter 3.7 --- Study setting --- p.52
Chapter 3.8 --- Sampling method --- p.52
Chapter 3.9 --- Data collection --- p.54
Chapter 3.10 --- Study instruments --- p.55
Chapter 3.11 --- Translation process for the AEOLI questionnaire --- p.60
Chapter 3.11.1 --- Establishing the semantic equivalence --- p.64
Chapter 3.11.2 --- Establishing the content and face validity --- p.66
Chapter 3.12 --- Pilot study --- p.67
Chapter 3.12.1 --- Testing the feasibility --- p.67
Chapter 3.12.2 --- Test-retest --- p.68
Chapter 3.13 --- Data cleaning --- p.70
Chapter 3.14 --- Data analysis --- p.70
Chapter 3.15 --- issues and consent Ethical --- p.72
Chapter 4. --- CHPATER FOUR: RESULTS
Chapter 4.1 --- Introduction --- p.74
Chapter 4.2 --- Recruitment of participants --- p.74
Chapter 4.3 --- Characteristics of the study sample
Chapter 4.3.1 --- Socio-demographic characteristics --- p.76
Chapter 4.3.2 --- Clinical characteristics --- p.79
Chapter 4.3.3 --- Functional and health status --- p.81
Chapter 4.4 --- Descriptive statistics of AEOLI-C, preference for place of death and perception of RCHEs as residents’ own home
Chapter 4.4.1 --- Descriptive statistics of AEOLI-C --- p.83
Chapter 4.4.1.1 --- Decision making (Attitude 1) --- p.83
Chapter 4.4.1.2 --- Pain (Attitude 5, 9, 20) --- p.83
Chapter 4.4.1.3 --- Care environment (Attitude 3, 6, 10, 15, 27) --- p.84
Chapter 4.4.1.4 --- Living wills (Attitude 8, 14, 19, 24) --- p.84
Chapter 4.4.1.5 --- Euthanasia / Physician assisted suicide (Attitude 4, 17, 18, 26) --- p.85
Chapter 4.4.1.6 --- Ageism (Attitude 13, 16, 23) --- p.85
Chapter 4.4.1.7 --- Psychological needs including religious/spiritual (Attitude 11, 25) --- p.85
Chapter 4.4.1.8 --- Quality versus quantity of life (Attitude 2, 7, 21, 22) --- p.85
Chapter 4.4.1.9 --- Societal awareness (Attitude 12) --- p.86
Chapter 4.4.2 --- Descriptive statistics of the perception of RCHEs as residents’ own home --- p.86
Chapter 4.4.3 --- Descriptive statistics of the preference for place of death --- p.86
Chapter 4.5 --- Correlational and logistic regression results
Chapter 4.5.1 --- Correlational and regression results of the predictive factors associated with AEOLI-C --- p.89
Chapter 4.5.1.1 --- Decision making (Attitude 1) --- p.89
Chapter 4.5.1.2 --- Pain (Attitude 5, 9, 20) --- p.90
Chapter 4.5.1.3 --- Care environment (Attitude 3, 6, 10, 15, 27) --- p.91
Chapter 4.5.1.4 --- Living wills (Attitude 8, 14, 19, 24) --- p.93
Chapter 4.5.1.5 --- Euthanasia / Physician assisted suicide (Attitude 4, 17, 18, 26) --- p.95
Chapter 4.5.1.6 --- Ageism (Attitude 13, 16, 23) --- p.97
Chapter 4.5.1.7 --- Psychological needs including religious/spiritual (Attitude 11, 25) --- p.99
Chapter 4.5.1.8 --- Quality versus quantity of life (Attitude 2, 7, 21, 22) --- p.100
Chapter 4.5.1.9 --- Societal awareness (Attitude 12) --- p.101
Chapter 4.5.2 --- Correlational and regression results of the predictive factors associated with the perception of RCHEs as residents’ own home --- p.104
Chapter 4.5.2.1 --- Relationship with socio-demographic characteristics, clinical characteristics, health and functional status --- p.104
Chapter 4.5.2.2 --- Relationship with AEOLI-C --- p.108
Chapter 4.5.3 --- Correlational and regression results of the predictive factors associated with preference for place of death --- p.110
Chapter 4.5.3.1 --- Relationship with socio-demographic characteristics, clinical characteristics, functional and health status --- p.110
Chapter 4.5.3.2 --- Relationship with AEOLI-C --- p.114
Chapter 4.6. --- Summary of the results --- p.116
Chapter 5. --- CHAPTER FIVE: DISCUSSION
Chapter 5.1 --- Introduction --- p.117
Chapter 5.2 --- Characteristic of the participants --- p.118
Chapter 5.3 --- The attitudes toward end of life issues --- p.120
Chapter 5.3.1 --- Decision making (Attitude 1) --- p.121
Chapter 5.3.2 --- Pain (Attitude 5, 9, 20) --- p.123
Chapter 5.3.3 --- Care environment (Attitude 3, 6, 10, 15, 27) --- p.125
Chapter 5.3.4 --- Living wills (Attitude 8, 14, 19, 24) --- p.128
Chapter 5.3.5 --- Euthanasia / Physician assisted suicide (Attitude 4, 17, 18, 26) --- p.131
Chapter 5.3.6 --- Ageism (Attitude 13, 16, 23) --- p.133
Chapter 5.3.7 --- Psychological needs including religious/spiritual (Attitude 11, 25) --- p.135
Chapter 5.3.8 --- Quality versus quantity of life (Attitude 2, 7, 21, 22) --- p.136
Chapter 5.3.9 --- Societal awareness (Attitude 12) --- p.137
Chapter 5.4 --- The perception of RCHEs as residents’ own home --- p.138
Chapter 5.5 --- The preference for place of death --- p.140
Chapter 5.6 --- Summary --- p.143
Chapter 6. --- CHAPTER SIX: CONCLUSION
Chapter 6.1. --- Introduction --- p.145
Chapter 6.2 --- Limitations of the study --- p.145
Chapter 6.2.1 --- Generalization of the results --- p.145
Chapter 6.2.2 --- Lack of theoretical construct of the translated questionnaire --- p.147
Chapter 6.2.3 --- Limitations of quantitative study and cross-sectional design --- p.149
Chapter 6.3 --- Contributions of the study --- p.150
Chapter 6.4 --- Recommendations and implications to nursing practice --- p.152
Chapter 6.5 --- Implications to the EOL Care Practice in Residential Care Setting --- p.154
Chapter 6.6 --- Implications to residential care policy --- p.155
Chapter 6.7 --- Recommendations for further studies --- p.156
Chapter 6.8 --- Conclusion --- p.158
Chapter 7. --- REFERENCES --- p.160
Chapter 8. --- APPENDICES --- p.174

No
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.

碩士
東吳大學
法律學系
101
The Hospice Palliative Care Act and the Statute Organ Donation of Human Organ Transplantation Act both are the end of life will expression, how to compromise in with the legislative life autonomy community to be informed consent confirmed in the content of the contracts. Through legislation agreed to by selective spirit to the official registry of National Health Insurance IC Card. Informed consent to be stored in various medical institutions, not readily allow the first-line health care workers that the window period before the National Health Insurance IC Card logon, so in an emergency for the execution of the death of autonomy for the parties and their families, it is recommended to arrive more earlier lifetime funeral service contract to establish, with Hospice Palliative Care Act easing program of medical regulations in the National Health Insurance IC Card annotation, death need not be extended to medical institutions, autonomy. In Taiwan, the increasing economic scale gradually has been the public social acceptance with the social taboo personal live for death personal autonomy, although the plaintext can be expressed in the content of the contracts, but the contract content focuses on the funeral as well as processing, from the analysis on lifetime funeral service contract, actually lifetime funeral service contract no autonomy mean expression for the end-of-life death. The current real resuscitate intent or do not resuscitate, which should have been informed in the lifetime funeral service before the arrival of the medical institutions therapy moment then been informed by the physician before death The proposed autonomy, often the parties and their families cannot complete autonomy for death decisions in a timely manner, in the death autonomy inform medical institutions and personnel for the parties and for the parties to delay inform physicians and their families, and how to achieve the Hospice Palliative Care Act was amended in the National Health Insurance IC Card annotation to early lifetime alive funeral service contract to establish, with easing program of medical regulations in the National Health Insurance IC Card annotation, the proposed need not be extended to medical institutions. Notification obligation may be extended to the provide lifetime funeral service contract agencies, the implementation of the program of the Palliative Care Act in the National Health Insurance IC card annotation. During his lifetime funeral service contract providers should bear the obligation to the end-of-life wishes expressed from the legal level to modify or lifetime funeral service contract providers consensus training, will review the contract period early during his lifetime funeral service contract, the end of life Death autonomy mean expression addition to medical the contract reviewed the contract during the review of the contract during the lifetime funeral service contract, so that the parties and their families early in the lifetime funeral service contract was signed, can a clear understanding of the Hospice Palliative Care Act which be expressed in the National Health Insurance IC Card annotation program whether to amend the lifetime funeral service contract, apply by analogy, so that the provisions of the Statute Organ Donation of Human Organ Transplantation Act will be ordinance with “Do Not Resuscitate” letter of intent, the two Health Insurance IC card annotation programs should lead with the obligation to be informed, by a medical contract extends to the lifetime funeral service contract provider, which should be bounded by the provisions of the effectiveness of the court.

A comunicação de más notícias em saúde, concretamente no contexto de doença incurável (de que é exemplo mais flagrante a doença oncológica) é uma das tarefas mais exigentes e complexas que se colocam aos profissionais de saúde. Para além da constatação empírica do facto, numa revisão da literatura pela pesquisa em bases de dados científicas, encontram-se inúmeros testemunhos de doentes que descrevem a forma inadequada como foram informados da sua doença, e a forma como julgam que tal deveria ter sido feito. Poucos estudos se debruçam, contudo, sobre a perspetiva dos profissionais de saúde acerca do mesmo problema, e estes são geralmente qualitativos. O presente estudo teve por objetivo, compreender e analisar a forma como os profissionais encaram e vivem este problema e se a sua postura perante uma série de questões relacionadas com a transmissão de más notícias aos doentes se altera consoante cenários que os aproximam cada vez mais do doente. Para este efeito foi elaborado um questionário especificamente desenhado para tal, e aplicado por via eletrónica, a médicos e enfermeiros de uma Unidade Local de Saúde, colocando os inquiridos perante três cenários distintos: como transmitir más notícias a um doente hipotético, a um doente com quem o inquirido tenha laços familiares, e finalmente se o doente for o próprio profissional de saúde. Foi ainda incluído nos objetivos, investigar a fundamentação para as dificuldades que os profissionais de saúde reportam, no sentido de as compreender e identificar aspetos a melhorar. Foi constatada uma elevada aderência ao questionário, obtendo-se 248 questionários válidos para análise, fazendo supôr o interesse que o tema suscita, e a motivação para alterar comportamentos. Os dados obtidos confirmaram que a postura dos profissionais de saúde quanto à forma como devem ser transmitidas as más notícias é diferente, consoante se posicionam perante um doente hipotético, um familiar próximo ou eles próprios, consoante o grupo profissional e também é fortemente influenciado pela religiosidade de cada um. Estes achados levam-nos a concluir que a comunicação de más notícias, nomeadamente em contexto de doença incurável, tem que ser individualizada, e o próprio profissional de saúde tem que ser capaz de gerir as suas próprias emoções e vivências relativamente à morte, para conseguir comunicar melhor com os doentes. Este processo pressupõe uma aquisição de competências na área da comunicação que não são habitualmente transmitidas na formação pre-graduada, mas é nesta fase que os profissionais de saúde inquiridos apontam para que se deva promover essa preparação.
Communicating bad news in the health care setting, and particularly when addressing incurable diseases (like oncological diseases) is one of the most complex and demanding tasks for the health care professionals. Besides the empirical notion of the fact, accross international literature, numberless reports of patients can be found, speaking about the innapropriate manner in which they were informed of their clinical condition, and how they believe it should have been done. However, only a few studies report how health care professionals stand on this issue, and those are mainly qualitative. The present investigation aims to understand, and analyse the way health care professionals address this issue and if their views on the subject change according to different scenarios. A questionnaire was specifically designed and sent through mail to health care professionals working at a Local Health Unit (encompassing hospital and community physicians and nurses), facing them with three different scenarios: how to break bad news to an hypothetic patient, to a relative, or if the patient was the professional himself. It was also our purpose to study the difficulties pointed out by health care professionals on this issue, in order to understand them and improve conducts. There was a good response to the questionnaire, in a total of 248 valid responses, implying the subjects are interested and the problem still stirs people up. The data obtained seems to confirm that health care professionals‟ views on this matter do change according to how close they are to the patient, wether it‟s a regular patient, a close member of the doctor/nurses “family, or if they themselves are the patient dealing with that situation. The professional group (doctor/nurse) and religious/spiritual affiliation or beliefs of the health care professionals also influenced the way they believe disclosure should happen. We concluded that breaking bad news, specially in the context of incurable disease, has to be an individualized process, and that health care professionals must be able to cope with their own emotions and personal feelings towards death in order to communicate better with their patients. This process implies developing communication skills that are not usually talked about in pre-graduate training, though according to our subjects that is precisely be the right time to do it.