Dissertations / Theses on the topic 'End-of-life decision making'

Thesis (M.S.)--Medical College of Ohio, 2005.
"In partial fulfillment of the requirements for the degree of Master of Science in Nursing." Major advisor: Joanne Ehrmin. Includes abstract. Document formatted into pages: ii, 63 p. Title from title page of PDF document. Bibliography: pages 59-61.

The health care system has, in many respects, been developed to oppose suffering. Yet health care’s almost compulsive urge to treat death as the enemy and to battle disease and injury with all available technology unavoidably results in suffering for someone. This paradox and its impact upon the decision-makers in critical care, has attracted some interest overseas, but none to date in Australia. This study sought to understand the interactions between the key stakeholders in end-of-life decision-making in critical care in the interests of developing strategies to ameliorate the avoidable suffering arising from these processes. A modification of Denzin’s Interpretive Interactionism (Denzin, 1989), was developed to apply the epistemological and ontological principles of the critical paradigm while preserving the advantages of Denzin’s design in the investigation of interactions. Semi-structured interviews with relatives, nurses and doctors from a variety of critical care units in South-East Queensland and New South Wales, provided the data that enriches this study. Using the critical lens, analysis focussed on the interactions (and gaps and silences) between the decision-makers at the key moments of decision-making: initiation, maintenance or withdrawal of life-sustaining treatments. A model of 'best practice' with respect to end-of-life decision-making was produced and concrete recommendations made. This project has found that the amelioration of avoidable suffering in the critical care environment related to end-of-life decision-making requires policy and procedural changes at the organisational level.

Aims: To evaluate end of life practices among hospitalised children who died of HIV/AIDS. Design: Retrospective chart review. Setting: A public, secondary and tertiary children's teaching hospital in a developing country. Patients: A consecutive series of in-patient deaths among HIV-infected children. Main Outcome Measures: Identification of patients as dying, presence of do not resuscitate (DNR) orders, documentation of comfort care plans, whether end of life decisions were discussed with parents or caretakers, nature of diagnostic and therapeutic interventions in the last 24 hours of life, and presence of pain and distress in the last 48 hours of life. Results: 165 out of 167 in-patient deaths were reviewed. 79% of patients died in the general wards. The median age of patients was 4 months. The median length of hospitalisation was 6 days. 30% of patients fell in Category B. Patients with shorter lengths of stay were more likely to fall in Category B (median 4 days versus 7 days, P=0.0000). About 1 quarter of patients had a median length of stay of 25 days. 84% of patients had a DNR order, with a median of 4 days between admission and documentation of the order. DNR orders appeared simultaneously in only 41 % of medical and nursing entries. 39% and 63% respectively of doctors did not document their justification for the DNR order or whether it had been discussed with parents. 50% of patients were identified as dying. Terminology such as 'TLC' and 'keep comfortable' designated 44% of patients to receive comfort care only. The median time between admission and identifying a patient as dying and documenting a comfort plan was 5 days and 7 days respectively. In 44% of folders there was no indication of whether the comfort plan had been discussed with parents. 73% and 62% respectively of patients with comfort plans received IV fluids and IV antibiotics in their last 24 hours of life. 55% of patients who died in general wards experienced pain and distress in the last 48 hours of life. Respiratory symptomatology and oral and oesophageal candidiasis accounted for most discomfort. 2 in 5 patients with a comfort plan failed to receive analgesia, despite pain and distress. Conclusions: Despite extreme diagnostic and prognostic uncertainty, doctors made key end of life decisions. Doctors' practices often failed to meet procedural and ethical requirements in professional guidelines. Failure to discuss DNR orders or comfort plans with parents ignores their role as principal decision makers for their children. The low rate of comfort plans, compared to DNR orders, suggests doctors had difficulty making the transition from curative to palliative care. Many comfort plans were incoherent and included interventions neither meant for, nor likely to promote patients' comfort. Whilst fear of hastening death may explain doctors' reluctance to prescribe adequate analgesia, undertreating pain and distress in a dying child is of more concern morally and medically than the risk of suppressing respiratory effort. To achieve better end of life care for HIV-infected children, it will be necessary to improve practice patterns. A structured medical treatment plan that focuses on goals of care is proposed to manage transitions from life-sustaining treatment to palliation.

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.

Heart failure (HF) is one of the top causes of mortality in the United States and globally. In order to combat the high mortality rates of this disease, medical technology, including internal cardioverter defibrillators (ICD) and left ventricular assist devices (LVAD), have become one of the most common treatments. Over the past 10 years the utilization of these cardiac devices has increased exponentially, which has created a new phenomenon of how we discuss death with patients who have one of these devices. The purpose of this dissertation is to increase understanding of the end-of-life decision making processes and current experiences that patients with a cardiac device are having. This dissertation includes four original manuscripts that focus on patients with a cardiac device and their experiences with decision-making at the end-of-life. The first paper is a data-based paper that examines experiences of patients with an ICD and what factors are associated with having a conversation with their providers about end-of-life. The second paper is an integrative review of the literature regarding what is currently known about end-of-life with an LVAD. The third paper is a psychometric evaluation of the Control Attitudes Scale-Revised (CAS-R) for patients with an LVAD. The fourth paper is a data-based manuscript that looks at patients with an LVAD and their attitudes and experiences with end-of-life conversations with providers and next-of-kin and the impact of cognition on these attitudes and experiences. The findings of this dissertation will hopefully inform providers of patients with cardiac devices about their patients end-of-life decision making processes. It will also demonstrate the gaps that are currently in practice, and ideally be able expand on how to assist patients and providers on improving communication about end-of-life decision making.

A descriptive study was conducted to explore whether or not there were any differences in perceptions of physicians, acute care nurses, long-term care nurses, and nurse practitioners associated with end-of-life decision making for people over 65 years of age. A convenience sample of 95 health care providers, all of whom were involved in direct patient care was used. Quantitative research techniques were employed for data collection and analysis. Statistically significant differences were found between four individual items on the CDMS and the health care providers. It was found that long-term care nurses believed items associated with pain and suffering, and culture to be more important than either physicians or acute care nurses, where as they found physicians input less important. A statistical significance was also found between the years spent in practice by health care providers and scores on the CDMS.

Thesis advisor: Megumi Inoue
End-of-life care planning is an opportunity for people to express how they want to spend the final stage of their lives by directing what type of medical treatment they wish or do not wish to receive. The completion of such planning is a way to exercise their autonomy, which is one of the fundamental ethical principles in medicine in the United States. Many older adults in the U.S., however, do not have such a plan or even discuss the topic with anyone. In order to understand the circumstances in which end-of-life planning is enacted, this study investigated two important research questions: (1) What are the sociodemographic and psychosocial factors that enhance or impede the completion of end-of-life planning? (2) How consistent is the content of a living will with the person's actual dying experience? These research questions were developed and examined as an application of expectancy theory, which explains the concepts of motivation and action. A series of logistic regression analyses were conducted. This study analyzed data from the Health and Retirement Study (HRS), which is a nationally representative sample of Americans over the age of 50. The analytic subsample included those who died between 2000 and 2010 (N = 6,668). The study found that persons who were older, who identified themselves as White, who had higher levels of income and education, and who were widowed or separated were more likely to be motivated to complete end-of-life planning. A higher level of sense of mastery was specifically relevant to documentation of living wills. On the other hand, a lower level of religiosity was specifically associated with having a durable power of attorney for health care. In addition, there was a clear connection between a request for palliative care and less troubling pain. Implications include conducting a community- or workplace-based public educational campaign, incorporating a culturally tailored approach for racial/ethnic minorities (e.g. faith-based interventions), using advance directives written in easy to understand language (e.g. Five Wishes), and funding Medicare provision for end-of-life care consultations between doctors and patients during annual physical exams
Thesis (PhD) — Boston College, 2014
Submitted to: Boston College. Graduate School of Social Work
Discipline: Social Work

Nearly one-third of all pediatric oncology patients die from their disease, so nurses need to have an evidence-based standard of practice to guide their role in end-of-life decision-making. The purpose of this integrative review is to analyze current research on end-of-life decision-making within pediatric oncology to create a practice guideline for nurses working with this patient population. Eleven studies were examined to identify nursing interventions regarding the role of the nurse in end-of-life care, the role of the nurse in end-of-life decision-making, parent involvement in end-of-life decision-making, and child involvement in end-of-life decision-making, including the child's ability to participate in end-of-life decision-making. Based on the findings, the researcher identified several interventions that can be used by nurses to facilitate end-of-life discussion and decision-making that includes both parent and, when appropriate, the child.
B.S.N.
Bachelors
Nursing
Nursing

The ethics literature to date has suffered from an inadequate empirical base on which to support discussion about practice, policy and education. Research in the area of ethical decision-making has been inconclusive because of unclear conceptualisations of moral problems, and different methods to investigate the extent to which nurses are confronted with them. In particular, the contextual influences on the formation of moral conflicts and nurses' responses to them have not been explored. In cancer care, there is anecdotal evidence that such influences have a powerful effect on the interaction between individual nurses and perceived moral problems. The study aims to redress previous inadequacies by exploring individual nurses' engagement with perceived moral problems as they occur on an acute cancer unit. The surrounding influences and effects on patient care are studied as part of a fieldwork analysis involving 18 months of participant observation. The researcher worked alongside individual nurses in order to deepen understanding of their perception of moral conflicts. Findings involve the central concern that ethical decisions are not made, and that this can, in part, be attributed to nurses' evident pattern of emotional distancing. The function of emotion in enabling moral engagement is a central argument of this thesis. The lack of a credible ethical language in practice and the effects of hierarchical decision-making are also explored. Against a backdrop of the frequently mismanaged border between acute and palliative care, these issues appear to combine to leave patients and their relatives unsupported as death approaches. By studying ethical decision-making in the context of its application, this study can reliably suggest ways forward in practice. The implications are far-reaching and offer recommendations which improve on those contained in recent policy literature. They will be of direct relevance to those involved in pre- and post registration, and to those responsible for acute cancer services in the UK.

Blood and marrow transplantation (BMT) has become an increasingly acceptable treatment for children with life threatening malignant diseases. Survival rates for transplant recipients vary from 23% to 63%. Children with complications from BMT, typically die in the hospital after a prolonged stay. The parental decision to allow a child to die a natural death is typically made in an aura of emotional duress and bewilderment at the complexity and volume of new information that must be assimilated.The purpose of this study was to describe the process of parental decision making for Do Not Resuscitate (DNR) or to withdraw life support in pediatric BMT.The framework for this study was developed from the author's epistemology that blends neo-modernism (recognition of individual uniqueness yet acknowledgment that certain underlying universal principals exist) with the idea that the nature of all things may be viewed as an ongoing, self-constructing process.Grounded theory methodology was used. The sample (determined through theoretical sampling) consisted of seven parents of children who died following BMT and for whom the parent made an end-of-life decision. Data was analyzed using constant comparative analysis, a method that combines both substantive and theoretical coding of data with a qualitative style of theory development.The realization of parental knowing was the process that parents used to navigate the human problem of having to make the end-of-life decision for their children who were dying following blood and marrow transplantation. This process consisted of four categories: Developing Trust, Committed to Seeing It Through, Facing My Worst Fear, and Acceptance of Self.The knowledge gained from this study will inform nurses who care for children who are dying following pediatric BMT. Strategies may be developed that will assist nurses to support the development of parental trust, to help sustain the commitment of parents as they move through the BMT treatment journey, and to assist parents as they face their worst fear. As a result, parents should be better able to achieve an acceptance for themselves that will facilitate a more satisfying experience of the ever changing process occurring in their own lives.

This thesis aims to illuminate how paediatricians in the United Kingdom (UK) make difficult medical decisions when treating severely disabled children with complex health conditions. In particular, it examines the part played, if any, by law, rights, and ethics in those decisions. After drawing on jurisprudence of the English and European Human Rights Court, together with existing scholarship, to analyse the doctors' decision making, this thesis adopts a legal consciousness theoretical approach. Using this it looks at how the paediatricians make sense of and conceptualise law when making these decisions. It examines how decisions are, by the paediatricians' own accounts, commonly made at present and what the paediatricians say about how they and their colleagues make such decisions. This thesis addresses the following research questions: i) Which decisions do UK paediatricians find particularly difficult when working with disabled children and what makes those decisions particularly difficult? ii) What factors do UK paediatricians take into consideration when making difficult decisions for disabled children and what weight do they put on those factors? iii) What formal education in law, rights, and ethics have the doctors received and to what extent, if any, can we discern how this education impacts on their difficult decisions for disabled children? iv) How do UK paediatricians construct and understand the law, rights, and ethics when making their difficult decisions? This thesis makes an original contribution, being the first in-depth socio-legal study examining UK paediatricians' medical decision-making for severely disabled children, by identifying two distinct styles paediatricians adopt when approaching best interest decisions, and by recommending a new category of legal consciousness. It concludes by recommending research and changes both in doctors' training and approach to best interest decision-making to address the current challenges paediatricians describe facing when deciding for severely disabled children.

Thesis (Ph. D.)--Georgia State University, 2006.
Title from title screen. Cecelia G. Grindel, committee chair; Laura P. Kimble, Frank Whittington, Carolyn Kee, committee members. Electronic text (220 p. : ill.). Description based on contents viewed May 2, 2007. Includes bibliographical references (p. 114-136).

Thesis (M.S.P.H.) PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you.
BACKGROUND: As critically ill patients approach the end of life in an intensive care unit (ICU), their families are often asked to make difficult decisions surrounding the withholding or withdrawal of aggressive care or resuscitative measures. Families are asked to exercise “substituted judgment” by making decisions from the imagined standpoint of the patient. ICU physicians work with families to support them through the decision-making process, but conflict commonly arises between physicians and family members regarding the optimal course of care for a critically ill patient. Existing qualitative data regarding physician perspectives and practical approaches to negotiating and managing these conflicts is limited. OBJECTIVE: To investigate and characterize how critical care physicians approach and manage conflict with surrogates with respect to decisions on withdrawing or withholding aggressive care in the ICU. METHODS: Semi-structured interviews were conducted with eighteen critical care physicians, recruited from two large academic medical centers in Boston. Interview transcripts were analyzed using methods of grounded theory to identify emergent themes and concepts, along with illustrative quotes. RESULTS: Physicians described an initial process of gauging surrogate receptiveness to provider input and recommendations. When faced with resistance to their recommendations for less aggressive care, provider approaches ranged from deference to family wishes to various negotiation strategies designed to change families’ minds. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family’s “substituted judgment” approach and the ability of the provider to manage patient pain and suffering. Providers described a common theme of concern for the family’s emotional needs; manifestations of this concern included efforts to alleviate guilt and stress associated with end-of-life decision-making by assuming some of the decision-making burden and strategies to repair damage to the provider-family relationship in the aftermath of conflict or disagreement. Providers also described personal stress and anxiety associated with contentious end-of-life decision-making, and the effect of career experience on their approach to conflict with families. CONCLUSIONS: Critical care physicians describe a multi-layered approach to physician-family conflict surrounding end-of-life decision-making in the ICU, including adaptive strategies to achieve optimal outcomes for both patient and family. These findings may help to inform future research and quality-improvement initiatives.
2031-01-01

As technology advances, health care decisions have become increasingly complex. American hospitals, based on accreditation standards, are required to have a system and process to address ethics, patient rights, and responsibilities. These practices vary widely, and there is very little consistency and few standards across the country. Key court cases have provided minor structure, and the federal government has been silent in the formulation of these structures but not necessarily in this arena. Most often, these accreditation standards related to clinical ethics are managed by Healthcare Ethics Committees (HEC). Bioethics has become a growing field, the level of integration between this discipline and healthcare practice varies widely. Using qualitative methods based on Grounded Theory, this analysis presents six key thematic findings, as well as interpretations to identify current challenges and opportunities to make recommendations for improvement by enhancing clarity and reducing ambiguity.

Urban Bioethics
M.A.
People with dementia account for a growing number of patients requiring end-of-life medical care each year in the United States. The clinical application of bioethical principles is rarely more important than in the context of end-of-life decision making, and determining the appropriate clinical treatment plan can be difficult and complex for clinicians, patients, and medical proxies. While the current bioethical literature offers a wealth of information on the principles underlying ethical medical practice, real-world clinical scenarios are often fraught with confusion, complexity, and conflicting understandings of best practices. There is a need for clinical decision-making tools that are both comprehensive yet simple, and broadly-applicable enough to be clinically useful. This thesis explores the cultural factors that necessitate further discussion and understanding of the issues surrounding end-of-life care for people with dementia, uses a clinical case to demonstrate a real-world approach to the ethical complexities surrounding such care, and proposes a basic ethical decision-making algorithm with the potential for broad application by students and clinicians encountering complex ethical scenarios.
Temple University--Theses

Thesis advisor: Pamela J. Grace
Significance/Background: Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Most find the role burdensome, often do not make decisions concordant with patients' wishes, and many suffer negative psychological aftereffects. Specific Aims: 1) Identify and describe the psychological processes of recent SDMs for adults at EOL in the intensive care unit (ICU) and 2) develop a theoretical model of SDMs' psychological processes. Methods/Analysis: Descriptive, multiple case study research design using a cognitive task analysis (CTA) interviewing approach. Participants completed an in-depth semi-structured CTA interview and a demographic form. Verbatim transcribed interviews were encoded and analyzed until theoretical saturation was met. Results: Nineteen SDMs (female=11) with a mean age of 59 years (± 11) who made decisions for patients (mean age, 67±13 years) who died in the ICU completed interviews. Data analysis yielded 27 psychological processes representing the hypothesized theoretical links amongst 20 individual psychological concepts. The PREDICAMENTS model (Psychology, Reasoning, and Ethics Demonstrated In Choices about the Acceptability of Medical Treatments and Patient Conditions Encountered in Life Threatening Situations) of surrogate decision-making was assembled from these psychological processes and concepts. The model depicts a complex web of psychological processes wherein SDMs ultimately express acceptance or rejection of medical treatments and/or the patient's physical condition based on their perception of the acceptability (or lack thereof) of medical treatments and/or the patient's physical condition. Conclusions: The PREDICAMENTS model offers an initial picture of the underlying psychological processes operating in SDMs decision-making. Implications for Practice and Research: The PREDICAMENTS model can be used to assess and understand SDMs' thought processes, emotions, and ethical concerns. Further research is needed to test and corroborate constructs and linkages in this model with the aim of developing decision support interventions. Ethicists need to discuss the implications of this descriptive theoretical model for the normative ethical standards expected of SDMs
Thesis (PhD) — Boston College, 2013
Submitted to: Boston College. Connell School of Nursing
Discipline: Nursing

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.

Sustainable demolition waste management is rarely practiced within the construction industry. This is mainly due to the fact that the decision-making process for sustainable demolition waste management is a very resource-demanding and time-consuming task in terms of data collection and data management. The decision-making process includes multiple analyses of possible demolition waste management alternatives from economic, environmental, and social perspectives. Such analyses require waste managers to capture and manage huge amounts of data scattered within fragmented data sources at the end-of-life of a building. The process of capturing and managing this information for the building end-of-life would be time-consuming and costly. Therefore, the waste managers are reluctant to pursue sustainable demolition waste management practices in order to prevent potential delays and incurred costs. This research identified information that is required to conduct sustainable demolition waste management analyses. The identified information was then classified based on information sources. An object-oriented data model (OODM) was proposed to allow the waste managers to more efficiently store and manage the information at the end-of-life phase. Furthermore, a sustainable demolition waste management prototype application was developed to demonstrate how the required information is captured from different sources of data, stored within OODM classes, and retrieved from the integrated database. Finally, the proposed OODM was verified in terms of its scope, flexibility, and implementability. The goal of the research is to offer a method for storing and managing end-of-life information in an efficient and effective manner to support sustainable demolition waste management decision making. To achieve the goal, this dissertation outlines the objectives of the research, the methodologies used in developing the object-oriented data model, conclusions, limitations, and potential future research work.
Ph. D.

This descriptive study explored possible relationships between death anxiety; perceived distance to death; health; importance of spirituality; advance directive importance, discussion, and completion; and associated sociodemographics for clients age 65 years and older. Also explored were the differences for these variables between the young-old and the old-old. The purpose was to determine if the measured items showed relationships that could be hypothesized as deterrents to completion of timely prehospital advance directives. A convenience sample of 105 clients comprised the sample population. Quantitative and qualitative research techniques were utilized in data collection and analysis. Significant positive correlations were found between: (a) discussion and completion of advance directives, (b) importance of spirituality and health, (c) health and projected finitude. Significant inverse relationships were found between: (a) health and death anxiety; (b) health and discussion of advance directives; (c) health and completion of advance directives; (d) the young-old and old-old finitude projections.

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 When cure is no longer possible, medical care should aim for a transition to palliative care regardless of disease. Patients with incurable cancer are often treated with palliative chemotherapy (PCT), starting with the intent to prolong life and increase quality of life. Eventually, in the late stages of the disease, the patient reaches a transition phase when further PCT neither prolongs life nor adds any predominantly positive effects. Aim of the thesis Study I: To analyse the proportion of patients with incurable cancer who received palliative chemotherapy during the last month of life, and to identify their discriminative characteristics. Study II: To develop a questionnaire assessing performance status in palliative chemotherapy, and to test its psychometric properties. Study III: To explore challenging situations experienced by registered nurses when administering palliative chemotherapy to patients with incurable cancer. Study IV:  To investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire in PCT would affect the proportion of patients receiving PCT during the last month of life, hospital admissions, notifications of performance status, documented decisions of ceasing PCT in the medical records, and/or place of death. A secondary aim was to gather registered nurses’ experiences of PSPC in clinical use. Methods In Studies I and IV, information from the medical records of deceased patients with epithelial cancers was used in descriptive analyses of the proportions of patients receiving PCT in counties in northernmost Sweden. A quantitative design was chosen, using non-parametric statistical methods. In Study II, a brief patient-completed questionnaire assessing performance status was developed and psychometrically tested. In Study III, data from research interviews with registered nurses were analysed qualitatively with a narrative thematic approach. Results Studies I and IV showed that about 25% of patients receiving PCT were treated during the last month of life. This group of patients had more hospital admissions, were less likely to die at home, and had fewer instances of documentation of the decision to cease PCT. The questionnaire developed in Study II was shown to have acceptable psychometric qualities such as reliability, validity, and sensitivity to detect deterioration in performance status. Study IV showed that the questionnaire gave nurses valuable information about patients’ performance status. The results also showed that 97% of nurses and 48% of physicians documented their patients’ performance status in the medical records. Study III demonstrated that when nurses administered PCT they considered futile, they could experience dilemmas created by the unforeseeable outcomes of PCT or stemming from insufficient communication between nurses, patients, next-of-kin, and physicians. Conclusions Administration of PCT can create dilemmatic situations for both the patient and medical staff when approaching end-of-life. This is underlined by the finding that some 25% of treated patients received their last round of PCT as late as during the last month of life. The decisions to cease PCT were less likely to be documented for patients who had received PCT within a month before death. Nurses described situations where they felt they were in the middle of the decision-making process regarding whether or not to continue PCT. They found the treatments were given on the authority of someone else; the physician’s recommendation or the patient’s and/or relatives’ request. The unpredictability of PCT was a continuous theme in the work described in this thesis, emphasizing the necessity of individually assessing every patient before PCT in order to minimize the risk of futile treatments. The attempt to develop a reliable and valid questionnaire for systematic assessment of performance status has increased future possibilities to monitor this parameter in PCT when approaching end-of-life. The questionnaire developed as part of this thesis has provided nurses with increased knowledge of patients’ performance status. If routinely used, it may help decrease the proportion of patients receiving PCT during the last month of life, though this remains to be rigorously proven. Further research efforts are needed to progress in the task of optimizing rather than maximizing the use of PCT when approaching end-of-life.
Bakgrund Cytostatikabehandling som ges vid obotlig cancersjukdom kan minska tumörbörda och besvärande symtom som t. ex smärta. Behandlingen ökar livskvalitet och överlevnadstid i många fall och bör därför erbjudas alla patienter som kan ha nytta av den. Dock är cytostatika potenta läkemedel som kan ge besvärliga biverkningar. Diskussionen i många studier pekar på att den förväntade överlevnaden bör överstiga en månad för att behandlingen ska kunna ha avsedd effekt. Då cytostatikabehandling vid obotlig cancersjukdom inte kan bota patienten är det alltid en tidsfråga innan nyttan med behandlingen avtar för att till sist helt upphöra. Fortsatt behandling med cytostatika innebär då risk för enbart negativa effekter i form av ökad trötthet, nedsatt immunförsvar och till och med livsförkortning. Möjligheterna att klara av fortsatt cytostatikabehandling bedöms inför varje behandling med blodprover och klinisk bedömning. På sjukhus utan tjänstgörande onkologspecialist träffar patienten sjuksköterskan som ger behandlingen. Ansvarig läkare kontaktas när provsvar eller något i patientens tillstånd avviker från det vanliga. När sjukdomen framskrider och patientens allmänstillstånd börjar svikta, bör syftet med behandlingen utvärderas och överväganden göras huruvida den ska fortsätta, regimen förändras eller avslutas. Min erfarenhet, ur ett sjuksköterskeperspektiv, av palliativ vård och cytostatikabehandlingar givna till patienter med obotlig cancersjukdom, fick mig att vilja undersöka hur många patienter som behandlas i livets slutskede. Jag ville också ta reda på hur bedömningen av patienten inför behandlingen gick till och om den kunde förbättras, samt hur sjuksköterskan upplevde att ge cytostatikabehandlingar i sent sjukdomsskede. Syften Att utforska andelen patienter med obotlig cancer som behandlas med palliativ cytostatika under sista levnadsmånaden samt att finna utmärkande karakteristika för denna grupp patienter. Att utveckla och psykometriskt testa en kortfattad enkät utformad för bedömning av patientens allmäntillstånd vid palliativ cytostatikabehandling. Att identifiera situationer som sjuksköterskor kan uppleva som utmanande vid cytostatikabehandling av palliativa patienter med cancer. Att undersöka om rutinmässig användning av enkäten utvecklad i studie II påverkat andelen patienter som behandlas med palliativ cytostatika under sista levnadsmånaden, andel sjukhusinläggningar, dokumentation av allmäntillstånd, dokumentation av avslutande av behandling i journal och/eller dödsplats. Metod Alla inkluderade patienter i studierna hade cytostatikabehandlats med anledning av obotlig, epitelial cancer (utgående från organens slemhinneceller) och var 20 år eller äldre.  Deltagande sjuksköterskor arbetade på cytostatikabehandlingsmottagningar/avdelningar. Både pati-enter och sjuksköterskor kom från Jämtland, Västerbotten och/eller Norrbotten. I studie I jämfördes journaldata från avlidna patienter som cytostatikabehandlats under sista levnadsmånaden med dem som avslutat behandlingarna tidigare. I studie II erbjöds patienter att delta i utvecklingen av en enkät som tagits fram för att mäta allmäntillståndet före cytostatikabehandling. I studie III intervjuades sjuksköterskor som arbetar med att ge cytostatika och deras berättelser analyserades med narrativ metod. I studie IV jämfördes journaldata för avlidna patienter som använt enkäten från studie II med matchade kontroller och i tillämpliga frågor data från studie I. Resultat Studie I visade att 23 % av alla patienter som cytostatikabehandlats någon gång under sista året före sin död även fick cytostatikabehandling under sista levnadsmånaden. Studien visade också en samvariation mellan behandling sista levnadsmånaden och fler sjukhusvistelser inom en månad efter sista behandling, färre dokumenterade beslut att avsluta behandlingen samt att färre patienter från denna grupp avled i hemmet. I Studie II konstaterades att den utformade enkäten uppvisade tecken på såväl reliabilitet, validitet som förmåga att detektera när patientens allmäntillstånd försämrades. Studie III visade att palliativa cytostatika kan upplevas som potenta och oförutsägbara läkemedel, som kan skapa dilemman för de sjuksköterskor som genomför behandlingarna när de ges till patienter som är försvagade av sin cancersjukdom. Sjuksköterskorna upplevde att de ibland stod mitt emellan läkare, patienter och närstående inför behandlingsbeslut. Studie IV visade ingen statistiskt säkerställd effekt av rutinmässig monitorering av allmäntillståndet med det i studie II framtagna formuläret. Varken behandling under sista månaden i livet, sjukhusvistelser, dokumenterade beslut att avsluta behandling eller dödsplats påverkades. Däremot rapporterade sjuksköterskorna att formuläret gav dem värdefull information om patientens allmäntillstånd inför behandling. Klinisk nytta för framtiden Fynden i studien kan vara till nytta för alla inblandade i cytostatikabehandlingen; patienten, närstående, sjuksköterskan och läkaren. Särskilt i beslutsprocessen om cytostatikabehandlingen ska fortsättas eller avbrytas. Metoder för att bättre bedöma prognostiska faktorer inför cytostatikabehandling behöver utvecklas ytterligare. I en framtida studie skulle formuläret kunna vidareutvecklas för datoriserad användning så resultaten förs in i patientjournalen, där både sjuksköterska och läkare enklare skulle ha tillgång till dem innan behandlingsbeslut. Slutsatser Behandling med palliativ cytostatika nära livets slutskede kan skapa situationer som upplevs som dilemman, både för patienten och för vårdpersonalen. I studierna behandlades 23-25 % av patienterna med cytostatika under sista levnadsmånaden. Dessa patienter vårdades oftare på sjukhus och färre av dem dog i hemmet. Sjuksköterskorna beskrev att de i vissa fall upplevde sig vara "mitt i mellan" i beslutsprocessen om cytostatikabehandling skulle ges eller inte. Cytostatikabehandlingens oförutsägbarhet visade sig vara ett genomgående tema i avhandlingen. Oförutsägbarheten leder till att individanpassning för varje enskild patient är av största vikt. Försöket till formulärutveckling skulle kunna öka möjligheten att mer objektivt använda allmäntillstånd som en parameter inför behandlingsbeslut när patienten nalkas livets slut. Formuläret visade sig ge sjuksköterskorna värdefull information om patienternas upplevda allmäntillstånd även om denna studie inte visade statistiskt säkerställda skillnader mellan de som använde formuläret och kontrollgruppens patienter. För att ytterligare optimera beslutsfattandet vid palliativ cytostatikabehandling när livets slutskede nalkas krävs fortsatt forskning.
Tausta Parantumattoman syöpäsairauden yhteydessä annettu sytostaattihoito voi vähentää kasvainkuormaa ja haittaavia oireita kuten esim. kipua. Monissa tapauksissa hoito parantaa potilaiden elämänlaatua ja antaa lisää elinaikaa. Siksi hoitoa on tarjottava kaikille potilaille, jotka voivat hyötyä siitä. Sytostaatit ovat kuitenkin potentteja lääkkeitä, joilla voi olla voimakkaat vaikutukset ja haittavaikutukset. Tutkimukset viittaavat siihen, että jäljellä olevan odotetun eliniän tulee olla yli kuukausi, jotta hoidolla olisi toivottu teho.  Koska parantumattoman syöpäsairauden yhteydessä annettu sytostaattihoito ei voi parantaa potilasta, on aina ajan kysymys, milloin hoidon teho alkaa vähetä loppuakseen viimein kokonaan. Silloin jatkettu sytostaattihoito merkitsee potilaalle vain negatiivisten vaikutusten riskiä lisääntyneen väsymyksen, heikentyneen vastustuskyvyn ja jopa eliniän lyhentymän muodossa. Potilaan mahdollisuus selvitä jatketusta sytostaattihoidosta arvioidaan ennen hoidon aloittamista verikokeiden ja kliinisen arvion perusteella. Jos sairaalassa ei ole päivystävää onkologian erikois-lääkäriä, potilas tapaa sairaanhoitajan. Vastaavaan lääkäriin otetaan yhteyttä silloin, kun koevastauksissa tai potilaan tilassa on jotain tavallisuudesta poikkeavaa. Kun sairaus etenee ja yleistila alkaa heiketä, potilaan elämänlaatu usein heikkenee ja elinaika lyhenee. Tällöin on syytä arvioida hoidon tarkoitusta ja pohtia, jatketaanko vai muutetaanko hoitoa, vai lopetetaanko se kokonaan. Kokemukseni sairaanhoitajana parantumattomien syöpäpotilaiden palliatiivisesta hoidosta ja sytostaattihoidosta herätti minussa halun tutkia, kuinka moni potilas saa hoitoa elämän loppuvaiheessa. Halusin myös tutkia, miten potilaat arvioidaan ennen hoitoa, onko arvioinnissa parantamisen varaa ja miten sairaanhoitajat kokevat elämän loppuvaiheessa annettavat sytostaatti-hoidot. Tavoitteet Tutkia, kuinka suuri osa parantumatonta syöpää sairastavista potilaista saa palliatiivista sytostaattihoitoa viimeisen elinkuukautensa aikana sekä löytää tämän potilasryhmän erottavat tekijät. Kehittää ja testata psykometrisesti lyhyt lomake, jolla mitataan potilaan yleistila palliatiivisen sytostaattihoidon yhteydessä. Tunnistaa tilanteita, jotka sairaanhoitajat voivat kokea ongelmallisina syöpäpotilaille annettavan palliatiivisen sytostaattihoidon yhteydessä. Tutkia, onko tutkimuksessa II laaditun lomakkeen rutiininomainen käyttö vaikuttanut viimeisen elinkuukautensa aikana sytostaattihoitoa saavien potilaiden osuuteen, sairaalahoitojaksojen osuuteen, yleistilan dokumentointiin, päättyneen lääkityksen dokumentointiin potilaskertomuksessa ja/tai kuolinpaikkaan.  Menetelmä Kaikki tutkimuksen potilaat olivat saaneet sytostaattihoitoa parantumattomaan, elinten limakalvosoluista lähtöisin olevaan epiteelisyöpään. Potilaat olivat 20 vuotta täyttäneitä ja asuivat Jämtlannin, Västerbottenin tai Norrbottenin alueella. Tutkimukseen osallistuneet sairaanhoitajat työsken-telivät saman alueen sytostaattivastaanotoilla tai -osastoilla. Tutkimuksessa I verrattiin tilastollisia menetelmiä käyttäen kuolleiden, viimeisen elin-kuukautensa aikana sytostaattihoitoa saaneiden potilaiden potilaskerto-mustietoja niihin potilaisiin, joiden hoito oli lopetettu ennen viimeistä elinkuukautta.  Tutkimuksessa II potilaille tarjottiin mahdollisuus osallistua sellaisen lomakkeen kehittämiseen, joka on laadittu mittaamaan potilaiden yleistilaa ennen sytostaattihoitoa. Tutkimuksessa III haastateltiin sairaan-hoitajia, ja heidän kertomuksensa analysoitiin narratiivisia menetelmiä käyttäen. Tutkimuksessa IV verrattiin kuolleiden, tutkimuksen II lomaketta käyttäneiden potilaiden potilaskertomustietoja sopivaan vertailuryhmään ja soveltuvissa osin tutkimuksen I tietoihin.  Tulokset Tutkimus I osoitti, että 23 % kaikista potilaista, jotka olivat saaneet sytostaattihoitoa viimeisen elinvuotensa aikana, saivat sitä myös viimeisenä elinkuukautenaan. Tutkimus osoitti myös, että viimeisen elinkuukauden aikana annetulla sytostaattihoidolla oli yhteisvaihtelua seuraavien tekijöiden kanssa: useat sairaalahoidot kuukauden sisällä viimeisestä sytostaatti-hoidosta, vähemmän hoidon lopettamispäätöksiä ja harvemmat ryhmään kuuluvista potilaista kuolivat kotona. Tutkimuksessa II todettiin, että laadittu lomake osoitti merkkejä sekä reliabiliteetista, validiteetista että kyvystä havaita erot sellaisten potilaiden välillä, joiden yleistila heikkeni tutkimuksen aikana.  Tutkimus III osoitti, että palliatiiviset sytostaatit voidaan kokea potentteina ja ennalta arvaamattomina lääkkeinä. Ne voivat kuitenkin olla ongelmallisia hoitaville sairaanhoitajille silloin, kun sytostaattihoitoa annetaan potilaille, jotka ovat syöpäsairautensa heikentämiä. Sairaanhoitajat kokivat, että he joskus hoitopäätöksiä tehtäessä joutuivat lääkäreiden, potilaiden ja läheisten "väliin" olematta kuitenkaan itse osallisia kommunikaatiosta. Tutkimus IV ei osoittanut, että tutkimuksessa II laaditun lomakkeen avulla suoritetulla rutiininomaisella yleistilan monitoroinnilla olisi mitään tilastollisesti osoitettavaa tehoa. Sillä ei ollut vaikutusta viimeisen elin-kuukauden aikana annettuun hoitoon, sairaalahoitojaksoihin, doku-mentoituihin hoidon lopettamispäätöksiin tai potilaan kuolinpaikkaan. Sairaanhoitajat ilmoittivat kuitenkin, että lomake antoi heille arvokasta tietoa potilaan yleiskunnosta ennen hoitoa. Kliininen hyöty tulevaisuudessa Tutkimuksen tuloksista voivat hyötyä kaikki sytostaattihoitoon osalliset, potilas, läheiset, sairaanhoitaja ja lääkäri; päätösprosessissa, joka koskee hoidon jatkamista tai lopettamista. On kehitettävä entistä parempia menetelmiä yleistilan arvioimiseksi ennen sytostaattihoidon aloittamista. Tulevassa tutkimuksessa voitaisiin tutkimuksen lomakkeesta kehittää sähköinen lomake, jolla tulokset kirjataan potilaskertomukseen, josta sekä sairaanhoitajat että lääkärit saavat tiedot ennen hoitopäätösten tekemistä. Johtopäätökset Elämän loppuvaiheessa annettu palliatiivinen sytostaattihoito voi aiheuttaa tilanteita, jotka voidaan kokea ongelmallisina sekä potilaan että hoitohenkilökunnan kannalta. Tutkimuksissa 23–25 % potilaista sai sytostaatti-hoitoa viimeisen elinkuukautensa aikana. Näitä potilaita hoidettiin useammin sairaalassa ja harvemmat heistä saivat kuolla kotonaan. Omien kuvaustensa mukaan sairaanhoitajat kokivat tietyissä tapauksissa joutuneensa "väliin" sytostaattihoidon jatkamista tai lopettamista koske-vassa päätösprosessissa. Sytostaattihoidon ennalta arvaamattomuus osoittautui tutkielman läpikäyväksi teemaksi.  Tämä ennalta arvaamattomuus merkitsee sitä, että on erittäin tärkeä räätälöidä hoito jokaiselle potilaalle yksilöllisesti.  Tutkielman puitteissa laadittu lomake voisi antaa lisämahdollisuuksia käyttää entistä objektiivisemmin yleistilaa parametrina, kun tehdään hoitopäätöksiä potilaan elämän loppuvaiheessa. Osoittautui, että lomake antaa sairaanhoitajille tärkeää tietoa potilaiden kokemasta yleistilasta vaikka tämä tutkimus ei osoittanutkaan tilastollisesti vahvistettavia eroja lomaketta käyttäneiden ja vertailuryhmän potilaiden välillä. Vaaditaan lisätutkimusta, jotta voitaisiin optimoida päätökset, jotka koskevat palliatiivista sytostaatti-hoitoa elämän loppuvaiheen lähestyessä.

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.

Background: The evidence base on end-of-life care in acute stroke is limited, particularly with regard to recognising dying and related decision-making. There is also limited evidence to support the use of end-of-life care pathways (standardised care plans) for patients who are dying after stroke. Aim: This study aimed to explore the clinical decision-making involved in placing patients on an end-of-life care pathway, evaluate predictors of care pathway use, and investigate the role of families in decision-making. The study also aimed to examine experiences of end-of-life care pathway use for stroke patients, their relatives and the multi-disciplinary health care team. Methods: A mixed methods design was adopted. Data were collected in four Scottish acute stroke units. Case-notes were identified prospectively from 100 consecutive stroke deaths and reviewed. Multivariate analysis was performed on case-note data. Semi-structured interviews were conducted with 17 relatives of stroke decedents and 23 healthcare professionals, using a modified grounded theory approach to collect and analyse data. The VOICES survey tool was also administered to the bereaved relatives and data were analysed using descriptive statistics and thematic analysis of free-text responses. Results: Relatives often played an important role in influencing aspects of end-of-life care, including decisions to use an end-of-life care pathway. Some relatives experienced enduring distress with their perceived responsibility for care decisions. Relatives felt unprepared for and were distressed by prolonged dying processes, which were often associated with severe dysphagia. Pro-active information-giving by staff was reported as supportive by relatives. Healthcare professionals generally avoided discussing place of care with families. Decisions to use an end-of-life care pathway were not predicted by patients’ demographic characteristics; decisions were generally made in consultation with families and the extended health care team, and were made within regular working hours. Conclusion: Distressing stroke-related issues were more prominent in participants’ accounts than concerns with the end-of-life care pathway used. Relatives sometimes perceived themselves as responsible for important clinical decisions. Witnessing prolonged dying processes was difficult for healthcare professionals and families, particularly in relation to the management of persistent major swallowing difficulties.

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.

Objective. To conduct a pilot study describing the decision making needs of family caregivers of terminally ill patients when making or supporting decisions regarding place of care at the end of life. Design. A pilot needs assessment using a semi-structured interview questionnaire. Setting. Palliative Care Unit (PCU), hospice, and a community served by a Palliative Care Consultant Team. Participants. Convenience sample of 14 family caregivers of terminally ill patients. Outcome measures. Standardized semi-structured interview guide and scales eliciting family caregivers': Perceptions of the decision (perceived options, stage and predisposition, decisional conflict, knowledge, expectations, values); perceptions of others (support, pressure, roles); personal and external resources; preferred resources; and participant and patient characteristics. Results. Home, PCU, hospice, long term care facility, and hospital were identified as decision options, with home and PCU equally considered the best. Most participants were 'very sure' about their decision, considered it easy to make, perceived the patient to be 'very sure,' felt informed of the options and their pros and cons, had adequate support and advice, felt no pressure, preferred to share decision making, and had received information and emotional support. A minority of participants (3/14) expressed more decisional conflict as did those participants in earlier stages of decision making. The resource most needed was tangible support, and individual counseling and printed information were preferred over discussion groups and Internet information. Conclusion. Family caregivers have important informational, emotional, financial, tangible, and decisional support needs. The results of this pilot study indicate that it is feasible to conduct this research with a larger, more diverse population with some revisions to the research methods. This study is a promising step in describing the decision making needs of family caregivers of terminally ill patients when making or supporting decisions regarding place of care at the end of life.

Background: For a long time the approach of clinicians towards death has focused only on the pathological process of the organ dysfunction, while the clinical practice has revealed a more holistic and multi-dysfunctional nature of death, as a biological, psychological and social process engaging the individual as a whole. In developed countries, moreover, the causes that lead to death are widely changed: today chronic and degenerative diseases are prevailing with an increase in people dying in intensely medicalized conditions or in morbid terminal conditions, related to the continuous progress in medical technology and to the increased life expectancy. Consequently, what concerns the end of life is still a source of many ethical issues and uncertainties in taking the decisions in clinical practice, especially in the suspension or abstention of a treatment. The multidisciplinary reflection on these issues has led to a large increase in the interest of numerous national and international researchers towards the end of life, pointing out a growing change in the common thought and a difference of approach to these issues by Italian physicians and professionals than their European and/or American colleagues. The literature shows a lack of data linked to the geriatric field, especially in Italy. Aims: The main purposes of the research called ELDY (End of Life Decisions studY) were: 1) to study the frequency and the typology of the decisions taken - by physicians and nurses working in geriatrics - in the clinical practice and in the life terminal phase of patients. 2) to investigate the end of life decisions-making opinions’ by physicians and other social health workers (employed in the elderly assistance). 3) to compare the achieved results with those of analogous studies done in National and European context. The secondary purposes consisted of: 4) detecting the potential relationships among the different attitudes towards end of life decisions and some cultural and working characteristics of the staff involved in the assistance of the elderly. 5) Formulating and judging the reliability of a more appropriate questionnaire for the Italian context, intended to analyze all the possible decisions and opinions that physician (or other health workers) could take in the final stage of the patient’s life. Materials and Methods: By means of a complex interdisciplinary work, which took into account the criticisms of previous national and international studies, a new evaluation questionnaire was developed and then sent to about 5000 doctors, nurses, health workers, psychologists and other staff employed in elderly patients assistance units in Veneto and Trentino Alto-Adige. It was also created a special website in which it was possible to fill in or download the material. The questionnaire was divided into three parts: the first part (Q1) was addressed only to physicians and nurses, concerning the last death that they attended; the second one (Q2) was referred to health workers, regarding their convictions and opinions about the end of life decisions; the last part (Q3) was designed to identify some general features of the professional. Results: The number of respondents was 1051 social and health workers: 205 physicians (MD), 508 registered nurses (RN), 173 healthcare workers (HW), 106 psychologists (PSY), and 59 of other personnel working in the involved structures. The questionnaires that met the selection criteria for the statistical analysis were 633 about the end-of-life decisions and 990 about the opinions stated: it is observed that 97% of doctors and nurses state that they have never intervened directly and intentionally to anticipate the end of life. It was found: two cases of euthanasia were reported (MD: 1 and IP: 1); twelve cases reported the termination of life without explicit request of the patient (MD: 2 and RN: 10); two cases of intentional medically assisted death, without, however, specifying who was the acting subject (patient, physician, nurse, other); cases of doctor-assisted suicide did not emerge. The 54.6% of respondents stated that they had started or had not stopped a treatment, taking into account the possibility that this act would have extended the life of the patient; otherwise the 21% claimed to have not withhold or withdrawal a treatment, taking into account the possibility, or with the clear intention, that this act could have anticipated the death of patients already in end-stage. About the opinions towards end-of-life decisions: only a lower number of professionals agrees on the principle of unavailability of life (MD: 31.4%, RN: 21%, HW: 32.4%, PSY: 13.5%), while the majority of respondents supports the “right to decide” to anticipate the end of life (MD: 46.1%, RN: 59.1%, HW: 59.3%, PSY: 61%) and takes into account the possibility not to implement or discontinue life-sustaining treatments (MD: 74.5%, RN: 79%, HW: 75.1%, PSY: 88.5%). Substantially concurring opinions among the various professionals have emerged regarding the appointment of a trustee to make decisions to anticipate the end of life if the patient is not in full possession of his faculties (MD: 79.9%, RN: 76.4%, HW: 73.1%, PSY: 88.6 %) and to draft the directives in advance on non-implementation or termination of life-sustaining treatments (MD: 60.5%, RN: 61.3%, HW: 64.9.%, PSY: 72.1%). A large majority of professionals also agrees on the value for the end-of-life decisions for an interdisciplinary approach based on not only medical and nursing figures (MD: 82%, RN: 83.9%, HW: 76.3%, 96.2% PSY). Conclusions: 1) Both physicians and nurses assume decisions with the possibility, or the intention, to hasten the end of life. 2) Many different professionals agreed on, for example: the principle of availability of human life, the importance of appointing a trustee in the case of non-competence, of involving relatives in the decision-making process, in order to satisfy the no-treatment request and to respect the advanced directives, the importance of pain relief, quality of life, respect the dignity and determination in assisting the patient in the terminal phase. Contrasting opinions emerged, however, about the practice of euthanasia. 3) Some interesting data that agree with the previous studies seem to confirm the reliability of the emerged answers of our study and an approach of the Italian physicians to the European colleagues both on the practices and on the opinions regarding the end life decisions. 4) The non-medical health professionals are more likely to the principle of self-determination of the patient, the possibility of allowing the use of drugs in lethal doses and to the delegation of decisions to be made by relatives in the terminal stages of life if not competent. Among the doctors who claimed to be in agreement with the statement that life is an unavailable value and there is no "right to die", no one has implemented a form of medically assisted death, and vice versa, more than half of those who disagreed took over a decision to end life in their last death assisted. 5) Between the Italian and European doctors and among the various professionals involved in the study it seems that a disagreement exists about the communicative approach the end of life. 6) Observing the high percentage of interest, the request for in-depth study of these issues and the number of respondents to the various questionnaire parties, we can consider as reached the target of elaborating a new instrument useful for investigating effectively bioethical issues of end-of-life decisions among the professionals employed in geriatrics. This questionnaire could become useful to monitor the development of stances and practices in physicians and other health workers. Finally, it can be extended beyond the field of geriatrics, to a national as well as international level
Background: Per molto tempo l'™orientamento dei clinici nei confronti della morte si è incentrato sul solo processo patologico della disfunzione d'™organo, mentre la pratica clinica rivela sempre più la natura olistica e multidisfunzionale della morte, da intendere non solo in termini di processo biologico, ma anche psicologico e sociale coinvolgente l'™individuo nella sua globalità . Nei paesi sviluppati, inoltre, le cause che portano al decesso sono ampiamente mutate: prevalgono oggi le patologie croniche e degenerative con un aumento di persone che giungono al decesso in condizioni ampiamente medicalizzate o in stato morboso terminale protratto correlato agli avanzamenti della tecnologia medica e alla maggiore aspettativa di vita. Quindi ciò che accade negli ultimi frangenti della vita è ancora oggi origine di numerose questioni etiche ed incertezze nelle decisioni che vanno assunte nella pratica clinica, in particolare nella sospensione o astensione di un trattamento. La riflessione multidisciplinare su tali problemi ha portato ad un forte aumento dell'™interesse verso il fine vita di numerosi ricercatori nazionali ed internazionali, evidenziando una crescente modifica del pensiero comune ed una differenza di approccio a tali argomenti da parte di medici e professionisti italiani rispetto ai colleghi europei e/o americani. In letteratura sono esigui i lavori in ambito geriatrico, in particolar modo in Italia. Scopi: Gli obiettivi primari dello studio ELDY (End of Life Decisions studY) erano: 1) studiare la frequenza e la tipologia delle decisioni assunte da Medici ed Infermieri coinvolti nel campo geriatrico nella pratica clinica durante la fase terminale della vita dei pazienti; 2) indagare le opinioni riguardanti le decisioni di fine vita dei Medici e del rimanente personale socio-sanitario impegnato nell'™assistenza al paziente anziano; 3) confrontare i risultati ottenuti con lavori similari condotti nel contesto europeo ed italiano. Gli obiettivi secondari erano: 4) individuare le potenziali associazioni esistenti tra le diverse opinioni riguardo le decisioni di fine vita e talune caratteristiche culturali e lavorative dei professionisti; 5) realizzare e valutare la validità di un nuovo questionario più adeguato al contesto italiano, pensato per indagare le opinioni e le decisioni di fine vita assunte dai professionisti nell'™assistenza al paziente terminale. Materiali e Metodi: E' stato elaborato un nuovo questionario di valutazione, mediante un articolato lavoro interdisciplinare che ha tenuto in considerazione le critiche rivolte a precedenti studi nazionali ed internazionali, e successivamente inviato a circa 5000 tra Medici, Infermieri, Operatori Socio-Sanitari, Psicologi e altro personale delle unità operative di assistenza al paziente anziano del Veneto e Trentino Alto-Adige. Inoltre è stato realizzato un apposito sito internet per compilare o scaricare il materiale. Il questionario era costituito da tre parti: la prima (Q1) compilabile solo da Medici e Infermieri e riguardante le decisioni assunte in riferimento all'™ultimo decesso cui il professionista ha assistito; la seconda parte (Q2) destinata a tutto il personale socio-sanitario, volta ad indagare le opinioni e le convinzioni in merito alle decisioni di fine vita; la terza parte (Q3) era adibita ad identificare alcune caratteristiche generali del professionista. Risultati: Hanno risposto al questionario 1051 professionisti socio-sanitari: 205 Medici (MD), 508 Infermieri (IP), 173 Operatori Socio-Sanitari (OSS), 106 Psicologi (PSY) e 59 di altro personale. I questionari che rispondevano ai criteri di selezione per l'™analisi statistica erano 633 per quanto riguarda le decisioni assunte e 990 per quanto riguarda le opinioni dichiarate. Relativamente alle decisioni assunte: il 97% dei medici ed infermieri afferma di non essere intervenuto in maniera diretta ed intenzionale per anticipare la fine della vita. Sono stati dichiarati: 2 casi di eutanasia (MD: 1 e IP: 1); 12 casi di soppressione della vita senza esplicita richiesta del paziente (MD: 2 e IP: 10); 2 casi di decesso in seguito ad atti compiuti con l'™esplicita intenzione di anticipare la fine della vita senza specificare, però, chi fosse il soggetto agente (paziente, medico, infermiere o altro); nessun caso di suicidio medicalmente assistito. Il 53.2% dei rispondenti ha affermato di aver iniziato o non interrotto un trattamento, tenendo in considerazione la possibilità che questo atto potesse prolungare la vita del paziente; il 21.2%, invece, ha dichiarato di non aver iniziato o di aver interrotto un trattamento tenendo in considerazione la possibilità oppure con l'™intenzione precisa che questo atto potesse anticipare la morte del paziente già in fase terminale. Per quanto riguarda invece le opinioni: solo una minor parte dei professionisti concorda con principio dell'™indisponibilità della vita (MD: 31.4%, IP: 21%, OSS: 32.4%, PSY: 13.5%), mentre la maggior parte dei rispondenti è favorevole al "diritto del paziente di decidere" sulla possibilità di anticipare la fine della vita (MD: 46.1%, IP: 59.1%, OSS: 59.3%, PSY: 61%) e sulla possibilità di non attuare o di interrompere trattamenti di sostegno vitale (MD: 74.5%, IP: 79%, OSS: 75.1%, PSY: 88.5%). Pareri sostanzialmente concordanti tra i vari professionisti sono emersi, in caso di paziente non competente, in merito alla nomina di un fiduciario per assumere decisioni di anticipare la fine della vita (MD: 79.9%, IP: 76.4%, OSS: 73.1%, PSY: 88.6%) e alla predisposizione di direttive anticipate relative alla non attuazione o interruzione di trattamenti di sostegno vitale (MD: 60.5%, IP: 61.3%, OSS: 64.9.%, PSY: 72.1%). Un'ampia maggioranza di professionisti, inoltre, concorda con l'utilità nelle decisioni di fine vita di un approccio interdisciplinare in cui siano presenti non solo figure mediche e infermieristiche (MD: 82%, IP: 83.9%, OSS: 76.3%, PSY 96.2%). Conclusioni: 1) Sia medici che infermieri assumono decisioni con la possibilità o con l'™intenzione di anticipare la fine della vita. 2) I differenti professionisti presentano pareri concordanti per quanto riguarda, ad esempio: il principio della disponibilità della vita umana, l'™importanza di nominare un fiduciario in caso di non competenza, il coinvolgimento dei familiari nel processo decisionale, il soddisfare la richiesta di non trattamento e di rispettare le dichiarazioni anticipate, l'™importanza del sollievo del dolore, della qualità di vita, del rispetto della dignità e volontà del paziente terminale. Pareri discordanti presentano, invece, in merito alle pratiche eutanasiche. 3) Alcune rilevanti concordanze con lavori precedenti sembrano avvalorare le risposte da noi riscontrate e confermare un avvicinamento dei medici italiani ai colleghi europei, sia sulle pratiche, che sulle opinioni di fine vita. 4) Il personale sanitario non medico si dimostra più favorevole al principio dell'™autodeterminazione del paziente, alla delega ai parenti delle decisioni da assumere nelle fasi terminali della vita in caso di non competenza e alla possibilità di consentire l'™uso di farmaci in dosi letali. Tra i medici d'™accordo che la vita è un bene indisponibile e non esiste un "diritto a morire", nessuno ha attuato una forma di morte medicalmente assistita, viceversa, più della metà di chi non lo era ha poi dichiarato di aver attuato una decisione di fine vita nell'™ultimo decesso seguito. 5) Sembrano esistere discordanze tra i medici italiani ed europei e tra i vari professionisti coinvolti nello studio in merito all'™approccio comunicativo nel fine vita. 6) Alla luce delle elevate percentuali d'™interesse, delle ulteriori richieste di approfondimento di tali temi e del numero di rispondenti, si può ritenere raggiunto l'obiettivo che prevedeva l'™elaborazione di un nuovo strumento utile ad esplorare efficacemente le questioni bioetiche inerenti il fine vita tra i professionisti coinvolti nel campo geriatrico. Esso può divenire un mezzo utile per monitorare l'andamento delle opinioni e delle pratiche del personale medico e non. Infine potrebbe essere estendibile oltre il campo geriatrico, a livello nazionale ed internazionale

The aim of this thesis is to explore how institutional cultures and policies relating to patient autonomy influence physicians’ clinical and ethical approaches to do-notresuscitate (DNR) decision-making at the end of life. I explore this in the context of the evolution of the American medical profession that shifted medical decision-making power from paternalism to patient autonomy. Decades ago, the “doctor knows best” attitude prevailed. Since then, the pendulum has swung towards honouring patient autonomy. This thesis explores the implications of these changes and considers the tensions between the principle of beneficence and patient autonomy. I conducted 58 semi-structured in-depth interviews with internal medicine physicians, sampled by years of experience and medical subspecialty. These interviews were conducted at three academic medical centres in the United States (University of Washington, Johns Hopkins, Columbia New York Presbyterian) and one in the United Kingdom (Addenbrooke’s Hospital). It emerged during the research process that two of these four hospitals had policies that prioritised patient autonomy whereas the other two hospitals had policies that prioritised making decisions in the patient’s best interest. The main focus of this dissertation is on the United States, where three of the hospital sites are located. The UK serves as an additional site as there are no hospitals in the United States that permit unilateral physician decision-making in the way that the UK allowed at the time of the study. The focus on autonomy in American medicine today highlights the importance of freedom and choice to make one’s own decision. However, to truly honour patient autonomy, the patient or surrogate must have an adequate understanding of his situation and choices. Although the shift away from paternalism was a necessary positive step, I argue that the way in which autonomy is practiced reflects a reductionist notion of autonomy that disempowers rather than empowers patients, as patients are asked to make choices without the understanding or guidance necessary to make informed choices. Particularly at hospitals where autonomy is prioritised over other ethical principles such as best interest, trainee physicians equate autonomy with giving a menu of choices. They are uncomfortable giving a recommendation based on clinical knowledge as they worry that would be infringing upon patient autonomy. However, trainee physicians feel ethically compromised and experience significant moral distress when they are asked to provide therapies that they perceive to be futile. Despite that, doctors are still power brokers in the physician patient relationship and are able to manipulate conversations in other ways to sway patients towards a decision that they believe is in the patient’s best interest. Through a Habermasian approach, I explore how trainee communication practices of using purposefully graphic descriptions of resuscitation to discourage that choice are pathologic and disempowering. Physicians are fully inculcated in their respect for autonomy but unintentionally resort to strategic forms of communication because they feel constrained to resist recommendations in the name of autonomy. Rather than focusing on an ideology of autonomy, the American medical system needs to move towards practices that embrace a more nuanced and empathetic form of autonomy that fosters a more open form of communication that allows for cocreation of consensus between doctors and patients.

This is a cross-national qualitative study with the purpose of obtaining perspectives held by people with quadriplegia and leading figures in disability movements in the Netherlands and Australia on the issues of euthanasia and physician-assisted suicide (EPAS). A disability voice is not prominent in public debate on EPAS in Australia or the Netherlands, even though people with disabilities are often thought to be vulnerable in relation to EPAS policies. Disability perspectives are potentially valuable in illuminating issues in relation to euthanasia and physician-assisted suicide, because issues of dependence, independence, and individual autonomy play important roles in relation to both EPAS and to living with disability. The study's methodology uses a phenomenological approach and incorporates aspects of heuristics and grounded theory. Its conceptual framework incorporates MacIntyre's (1999) theory of acknowledged dependency and vulnerability; Habermas' (1989) theory of knowledge; and Festinger's (1959) theory of cognitive dissonance. The main sample of twenty people with quadriplegia (the grassroots sample) was interviewed in the Netherlands and in Australia.

Abstrakt: Beslut gällande patienters HLR-status fattas av läkare, men den process som föranleder beslutet bör involvera flera parter. I enlighet med autonomiprincipen ska patienter vara delaktiga i de beslut som berör deras egen vård. Syftet: med denna litteraturstudie var att undersöka några frågor kring HLR/ej-HLR vid vård i livets slutskede. Metoden var en systematisk litteraturstudie, baserad på tio vetenskapliga artiklar. Litteratursökningen utfördes i databaserna PubMed och CINAHL, samt manuella sökningar. Både kvalitativa och kvantitativa artiklar inkluderades i litteraturstudien. I resultatet framkom det tre olika huvudteman samt två underteman. Det tema som framkom tydligast i resultatet var; information i livets slutskede. Informationsbehovet rörande HLR, bland patienter som vårdas i livets slutskede, skiljer sig åt och bör därför individanpassas. Eftersom sjuksköterskor oftast är de som har mest kontakt med obotligt sjuka patienter, är det av stor vikt att de involveras i beslutsfattandet. Det framkom även att patientens livskvalitet är en faktor som inverkar på beslut gällande HLR. Upplevelsen av livskvalitet är individuell och kan därför vara svår för andra att bedöma. Att värna om patienters rätt till autonomi är essentiellt och speciellt gällande livsavgörande beslut. Allmänsjuksköterskans roll vid vård i livets slutskede bör därför vara, att på bästa möjliga vis tillmötesgå patienterna och därmed även underlätta de anhörigas sorgarbete.
Abstract: Decisions regarding patient’s CPR status are made by doctors, but the process that causes the decision should involve several parties. In accordance with the autonomy principle, patients should be involved in the decisions that affect their own care. The aim of this study was to examine some questions regarding CPR / DNR in the final stages of life. The method was a systematic literature review, based on ten articles. The literature search was performed in the databases PubMed and CINAHL, as well as manual searches. Both qualitative and quantitative articles were included in the literature review. The results revealed three main themes and two sub-themes. The theme that emerged most clearly in the results was: information in final stages of life. The need for information regarding CPR, among patient’s cared for at the end of life, differs and should be individualized. Because nurses often are the ones who have most contact with terminally ill patients, it is essential that they get involved in decision making. It also revealed that the patient’s quality of life is a factor influencing the decision regarding CPR. The perception of quality of life is individual and can therefore be difficult for others to judge. Protecting patients’ rights to autonomy is essential, especially regarding vital decisions. General Nurses role, when caring for patients in their final stages of life, should therefore be, in the best possible way, to accommodate the patients and by doing so also help to ease the relative’s grief.

Syftet med föreliggande litteraturstudie var att beskriva vanligt förekommande problem samt faktorer som påverkar beslutsfattandet i vården av personer med demens i livets slutskede inom slutenvården. Artikelsökningen i databaserna Cinahl och Medline via PubMed resulterade i inkludering av 15 vetenskapliga artiklar. Resultatet visade att problem med näringsintag och komplikationer som pneumoni, feber och smärta var vanligt förekommande för personer med demens i livets slutskede. Flera drabbades av trycksår och rörelsehinder som exempelvis sänggrindar och bälten användes ofta. Det fanns brister i kommunikationen mellan vårdpersonal och anhöriga. Vårdpersonalen hade dåliga kunskaper om demens som sjukdom med tillhörande symtombild. Sjukdomsutveckling av demens var svår att förutsäga vilket komplicerade planeringen för den sista tiden i livet. Målet för omvårdnaden vid livets slut var välbefinnande. En uppfattning om hur livskvalitén var för de demenssjuka hade stor betydelse för hur vårdpersonal och anhöriga beslutade om vården. Anhöriga värdesatte i sitt beslutsfattande om personer med demens hade skrivit ner sina egna önskemål, angående vård vid livets slut, innan de försämrats i sjukdomen. Synen på döden påverkade både vårdpersonalens och anhörigas vilja att planera för vård vid livets slut. Det är viktigt att reflektera över hur vården av personer med demens i livets slutskede ser ut och det underlättas av att det finns kunskap om vanligt förekommande problem och faktorer som påverkar beslutsfattandet i vården.
The aim of this study was to describe common problems and factors affecting decision making in the care of people with dementia in the final stages of life in residential homes. Search for articles in databases Cinahl and Medline via PubMed resulted in the inclusion of 15 scientific articles. The results showed that problems with nutritional intake and complications such as pneumonia, fever and pain were common for people with dementia in the final stages of life. Several suffered from pressure sores and physical disabilities such as bed rails and belts were often used. There were deficiencies in communication between health care professionals and relatives. Health care professionals had poor knowledge about dementia as a disease and its symptoms. Disease development of dementia was difficult to predict which made it difficult to plan for the final stages of life. The aim of nursing care at the end of life was well-being. An idea of how the quality of life was for the persons with dementia was important to how health care professionals and relatives decided on nursing care. In their decision-making relatives gave great importance if the persons with dementia had written down their wishes, regarding care at the end of life, before they deteriorated in the disease. The attitudes towards death affected both nursing staff and relatives wish to make plans for the end-of-life care.  It is important to reflect on how the care of people with dementia in the final stages of life is like and this is facilitated by the existence of knowledge about common problems and factors affecting decision making in nursing care.

This is a cross-national qualitative study with the purpose of obtaining perspectives held by people with quadriplegia and leading figures in disability movements in the Netherlands and Australia on the issues of euthanasia and physician-assisted suicide (EPAS). A disability voice is not prominent in public debate on EPAS in Australia or the Netherlands, even though people with disabilities are often thought to be vulnerable in relation to EPAS policies. Disability perspectives are potentially valuable in illuminating issues in relation to euthanasia and physician-assisted suicide, because issues of dependence, independence, and individual autonomy play important roles in relation to both EPAS and to living with disability. The study's methodology uses a phenomenological approach and incorporates aspects of heuristics and grounded theory. Its conceptual framework incorporates MacIntyre's (1999) theory of acknowledged dependency and vulnerability; Habermas' (1989) theory of knowledge; and Festinger's (1959) theory of cognitive dissonance. The main sample of twenty people with quadriplegia (the grassroots sample) was interviewed in the Netherlands and in Australia.

Le processus décisionnel est un évènement particulier qui confronte les soignants à leurs doutes et à leurs incertitudes. Chaque décision comporte inéluctablement une part de doute et d’incertitude, sinon elle ne mérite pas d’être appelée « décision », car elle ne serait que le résultat de l’application d’un savoir acquis à l’avance, à une situation connue. C’est cette part d’incertitude qui est le lieu de la réflexion et qui offre à chacun la possibilité de se questionner, c’est-à-dire de se mettre dans la situation où il faut vaincre l’indécidable pour pouvoir décider. Au cours de ce travail, j’aborde le rôle du médecin en tant qu’arbitre entre le certain et l’incertain en situation de fin de vie chez le nouveau-né. Afin de cerner cette problématique, je rapporte six observations cliniques, toutes tirées de ma propre expérience et qui illustrent mieux qu’un long discours les notions du certain et de l’incertain, et permettent de donner à chacune de ces notions son véritable sens pratique de manière concrète.Vouloir aborder la notion de l’incertain au cours du processus décisionnel en situation de fin de vie, consiste à accepter d’aller à l’encontre de la culture médicale dominante, qui valorise la certitude, car l’incertitude véhicule une image négative dans l’imaginaire des soignants. Pourtant, le doute peut avoir un effet salvateur sur le processus décisionnel, car il incite les soignants à se concerter avant de décider. Ainsi, celui qui doute n’est pas un ignorant, mais quelqu’un de prudent au sens aristotélicien, c’est-à-dire qui soumet son choix à la critique des autres, dans le cadre d’une procédure de délibération collégiale. Ainsi, l’incertitude met en tension les convictions qui relèvent de l’éthique déontologique, et la responsabilité qui relève de l’éthique téléologique. C’est la confrontation entre ces deux éthiques qui permet au soignant de décider en ayant la paix dans l’âme
The end-of-life (EOL) decision-making process remains a particular event that confronts health care teams with their doubts and uncertainties. Indeed, for such a decision to made, there must be some doubt and uncertainty, otherwise, instead of being a conscious “decision”, it becomes a simple application of prior knowledge. EOL decisions are not simply a case of the decision-maker overcoming his or her indecisiveness. In this work, I examine the role of the doctor as an arbitrator in the conflict between the certain and the uncertain in EOL situations in the neonatal period. I have based my work on the analysis of the trajectories of six clinical observations drawn from my own experience, which illustrate, better than a long speech, the notion of the certain and the uncertain, and give these abstract concepts a concrete and practical meaning.To explore the notion of the uncertain during the decision-making process in EOL situations, is to accept to go against the dominant medical culture that values certainty, because uncertainty is negatively perceived amongst caregivers. However, doubt can have a beneficial effect on the decision-making process itself, and on the consequences of the decision taken, since it encourages discussion between caregivers and allows time for decision-making. Thus, he or she who doubts is not ignorant, but cautious in the Aristotelian sense, when trying to deliberate a choice by subjecting it to the criticism of others as part of a procedure of collegial reflection.In this work, I also show that doubt and uncertainty compel the decision-maker to confront his or her personal convictions, which constitutes ethical ethics, with his or her responsibility, which is teleological ethics. It is only in the tension between these two ethics that the caregiver can decide with peace of mind

This thesis is the first comprehensive empirical study of how doctors are perceiving and experiencing their statutory role under recently commenced voluntary assisted dying legislation in the Australian state of Victoria. The study uses doctrinal research and qualitative interviews to examine the centrality of doctors to the VAD system in Victoria, and the impact of their willingness to provide VAD on the system’s sustainability. It concludes that stronger supports for doctors who conscientiously participate in VAD is essential, in the face of significant conscientious objection and other reasons for non-participation in VAD reported by the broader medical profession.

Introdução: O avanço tecnológico da medicina, sem dúvida trouxe aspectos positivos ao homem como salvar vidas. Em contrapartida, tem contribuído de forma desmedida para o prolongamento dessas, o que tem gerado diversos questionamentos do ponto de vista bioético principalmente na área da Terapia Intensiva. Ambiente esse, que com frequência se depara com pacientes em fase de terminalidade da vida e com perda da capacidade de exercício da autonomia. Objetivos: Avaliar o posicionamento dos médicos que atuam em Unidades de Terapia Intensiva (UTIs) diante de diretivas antecipadas de vontade (DAV) de pacientes e como objetivos específicos, avaliar o conhecimento e valores associados às DAV; identificar possíveis fatores que possam interferir na tomada de decisão; avaliar o desenvolvimento psicológico-moral destes médicos como meio de verificar a capacidade de tomada de decisão e comparar estas características, entre os médicos que atuam em Belém do Pará e em Porto Alegre. Métodos: Estudo transversal de base populacional, envolvendo UTIs de seis hospitais públicos, cinco no Pará e um no Rio Grande do Sul. Dois instrumentos foram utilizados para a coleta dos dados, um questionário autopreenchido composto por dados sociodemográficos e características dos profissionais, questões relacionadas ao tema e quatro diferentes cenários clínicos apresentados para avaliar o posicionamento dos médicos. O segundo instrumento buscou avaliar o desenvolvimento psicológico-moral dos profissionais. Os dados foram avaliados de forma quantitativa e qualitativa. Resultados: Os 115 participantes da pesquisa apresentaram uma média de idade de 40,59±9,06 anos. A maioria relatou prática religiosa (54,8%) com associação estatisticamente significativa entre os grupos estudados (p<0,001), em Belém 76,4% dos médicos praticavam uma religião e em Porto Alegre 35%, predominando a religião católica. Dentre os participantes, a maioria tinha mais de 10 anos de formado (66,9%), o mesmo se observando com o tempo de atuação em UTI (50,4%). Dentre esses, a maioria era Intensivista (63,5%). Três associações significativas foram observadas em relação às especialidades: a titulação em Medicina Intensiva, se associou com Porto Alegre (P<0,001) e a Cirurgia Geral (P<0,001) e ausência de titulação especializada (P<0,005) com Belém. Quanto ao desenvolvimento psicológico-moral, observou-se quatro estágios: conformista (2,5%), consciencioso (44,1%), autônomo (44,1%) e integrado (6,8%). Quanto ao conhecimento sobre DAV, a maioria dos participantes (83,5%) afirmou conhecer. Com relação à utilização desse instrumento, (80,9%) foi favorável, seguido dos que talvez utilizasse (14,8%) e não utilizaria (4,3%), com associação significativa entre os grupos (P=0,013), evidenciando-se, resposta "sim" para Porto Alegre e "não" para Belém. A principal justificativa para a utilização das DAV foi a autonomia (67,7%). Entre os participantes que talvez utilizasse esse documento, a justificativa foi que, esse poderia limitar a decisão (29,3%). Na necessidade de uma legislação específica, a maioria dos médicos foi favorável (88,7%), havendo uma associação estatisticamente significativa (P=0,045), entre os grupos, com Belém, se associando a uma posição mais legalista. A justificativa mais utilizada para uma legislação foi o amparo legal (53,9%). Em caso de legislação específica a maioria dos médicos (81,7%) acataria a DAV. No primeiro cenário, a maioria dos médicos (94,0%) levaria em consideração a vontade do paciente em diferentes níveis, havendo uma associação significativa entre os grupos (P=0,004). No segundo cenário, 80,0% considerou a vontade do paciente determinante. No terceiro, (96,5%) levaria em consideração a vontade do paciente em diferentes graus, com destaque (71,3%) para a vontade do paciente ser determinante, com associação significativa entre os grupos (P=0,003). No quarto cenário, a maioria dos médicos (86,1%) também levaria em consideração a vontade do paciente em diferentes graus, com associação significativa (P=0,001) entre os grupos. Quanto à justificativa para implantar ou não implantar terapêutica fútil, (83,5%) consideraram ambas justificáveis, com significância estatística entre os grupos (P=0,001). Quanto aos fatores que influenciam a tomada de decisão, os mais frequentes foram, os aspectos éticos (94,8%), legais (88,7%), morais (73,9%), técnicos (67,0%) e aspectos religiosos do paciente (52,2%). Conclusão: É possível concluir que os médicos participantes deste estudo conhecem e utilizariam as diretivas antecipadas de vontade, mas reconhecem a necessidade de ter um amparo legal específico para esta questão. Os dados gerados neste estudo, evidenciam que os médicos valorizam a vontade dos pacientes e buscam realizar decisões compartilhadas. Além disto, fica evidente a influencia regional nos fatores associados ao processo de tomada de decisão.
Introduction: Technological advancements in the medical field have undoubtedly brought forth positive aspects to man such as saving lives. On the other hand, these advancements have contributed fearlessly to prolong these lives raising a great deal of questioning from a bioethical viewpoint mainly in the area of Intensive Therapy. Such area frequently deals with patients in the end of life and some who has lost the capacity to exercise autonomy. Objectives: to evaluate the opinion of physicians who work at Intensive Care Units (ICUs) regarding advance directives (AD) of patients and as specific objectives to evaluate the knowledge and values associated to AD; identify possible factors that can interfere with decision making process; evaluate the psychological-moral development of these physicians as a means to exam their capacity to make decision and compare these features between physicians who work in Belém do Pará and in Porto Alegre. Method: This is a transversal study based on population involving ICUs of six public hospitals five in Pará and one in Rio Grande do Sul. Two tools were used in data collection process, a self-completed questionnaire composed of social demographic data and features of the professional, questions related to the theme and four different settings were presented to evaluate the position of the physicians. The second tool sought to assess the psychological-moral development of the professionals. The data were assessed in terms of quantity and quality. Results: The 115 participants in the research were between de 26 a 63 years old, with mean age 40,59±9,06. Most of them reported some kind of religious practice (54,8%) showing significant statistic association between the groups evaluated (p<0,001), in Belém 76,4% of the physicians had some religious practice and in Porto Alegre 35%, Catholicism predominating. Amongst the participants most of them had been graduated for more than 10 years (66,9%), the same was seen regarding time of activity at ICU (50,4%). Most of these were Intensive Care Physicians (63,5%). Three significant associations were perceived in relations to the specialties: entitling in Intensive Medicine associated to Porto Alegre (P<0,001) and General Surgery (P<0,001) and the lack of specialized entitling (P<0,005) to Belém. Regarding to psychological-moral development, four stages were observed: conformist (2,5%), conscientious (44,1%), autonomous (44,1%) and integrated (6,8%). In regard to knowledge of AD, most of the participants (83,5%) claimed to know it. In relation to the use of this tool (80,9%) was favorable, followed by those who would maybe use it (14,8%) and those who would not use it (4,3%), showing significant association between the groups (P=0,013), evidencing the answer "yes" for Porto Alegre and "no" for Belém. The main justification for the use of AD was the autonomy (67,7%). Among the participants who would maybe use such document, the justification was that it could hinder the decision (29,3%). As for the necessity of specific legislation, most of the physicians were favorable (88,7%) revealing a significant statistic association (P=0,045) between the groups, where Belém associated to a more legalistic position. The most common justification for legislation was legal support (53,9%). In case of specific legislation most of the physicians (81,7%) would comply with the AD. In the first setting, most of the physicians (94,0%) would take into account the will of the patient in different levels revealing a significant association between the groups (P=0,004). In the second setting 80,0% considered the patient’s will as determinant. In the third (96,5%) would consider the patient’s will in different degrees highlighting (71,3%) the patient’s will as determinant, with significant association between the groups (P=0,003). In the fourth setting, most of the physicians (86,1%) would also consider the patient’s will in different degrees with significant association (P=0,001) between the groups. As regards the justification to introduce or not futile therapy (83,5%) considered both justifiable showing significant statistic between the groups (P=0,001). Related to the factors that influence decision making, the most frequent were ethical (94,8%), legal (88,7%), moral (73,9%), technical (67,0%) and the religious aspects of the patient (52,2%). Conclusion: It is possible to conclude that the physicians participating in this study know and would use advance directives, but they recognize the need of specific legal support in this matter. Data resulting from this study reveal that physicians value the will of the patient and seek to make shared decisions. Furthermore, the regional influence is evident in the factors related to decision making process.

This thesis has created new knowledge on how to identify people with a haematological cancer who are at high risk of deteriorating and dying. Using various research methods, six clinical indicators have been highlighted that identify people who may benefit from proactive palliative care planning. This research will help people with a haematological cancer have greater control over their death, and the time they have remaining.

La transplantation d'organe améliore durablement la qualité de vie de patients en défaillance organique terminale. Malheureusement le nombre de greffons disponibles est insuffisant pour traiter tous les patients inscrits en liste d'attente. En France, les organes greffés proviennent essentiellement de donneurs en mort encéphalique. En cas de maladie grave, incurable et rapidement mortelle, il est également possible dans certains pays (dont la France) d'arrêter les thérapeutiques qui maintiennent artificiellement un patient en vie et de prélever ses organes une fois le décès par arrêt circulatoire constaté. La loi n°2005-370 du 22 Avril 2005 (dite loi Léonetti) autorise l'arrêt des traitements lorsqu'ils apparaissent « inutiles, disproportionnés ou n'ayant d'autre effet que le seul maintien artificiel de la vie ». Pour certains, cette fin de vie médicalement planifiée devrait prendre en compte les souhaits du patient en matière de don d'organes et l'intérêt de la greffe pour la société. La position française était néanmoins jusqu'en 2014 de ne pas considérer le patient en fin de vie comme un donneur potentiel afin d'éviter toute confusion entre la décision d'arrêter les traitements curatifs et l'intention de prélever ses organes. Alors que ce type de prélèvement a débuté fin 2014 dans quelques sites pilotes français, nous avons examiné les aspects pratiques, juridiques et éthiques du prélèvement d'organe en situation de fin de vie médicalisée, en focalisant notre réflexion sur les droits du patient, la définition de la mort, la temporalité du processus de prélèvement, et les éléments qui déterminent les modalités d'arrêt des suppléances vitales
Organ transplantation saves lives of many persons who otherwise would die from end-stage organ disease. In the past decades the need for transplants has grown faster than the number of available organs. This increasing requirement for donated organs has led to a renewed interest in donation after circulatory determination of death (DCDD). In some countries including France, terminally ill patients who die of cardiac arrest after a planned withdrawal of life support may be considered as organ donors (controlled DCDD). Before 2005 French rules were not designed for such practices. With regard to patients in final stage of incurable diseases, the law number 2005-370 of April 22, 2005 authorizes the withholding or withdrawal of treatments when they appear "useless, disproportionate or having no other effect than solely the artificial preservation of life". Advocates of the controlled DCDD argue that the end-of-life care plan should incorporate the patient's wishes concerning organ donation and the public interest of transplantation. Until 2014, most French medical academics regarded the perceived conflict of interest that would arise for clinicians treating potential donors as a major ethical question. As the French program started at the end of 2014 in a few pilot sites, we thus examine the practical, legal and ethical issues that arise in considering controlled DCDD, including determination of the donor's overall benefit, debates relating to the diagnosis and time of death, and factors determining how life-sustaining treatment is to be withdrawn

Les règlementations incitent aujourd’hui concepteurs et fabricants à s,engager dans des démarches d'économie circulaire et d'écoconception pour atténuer l'impact de leurs produits sur l'environnement. Les choix de conception sont à ce jour essentiellement pilotés par l'évaluation de la valorisable du produit. Les lignes directrices associées aux démarches de conception pour X sont utilisées ensuite comme outil d'aide à la décision pour la recherche de solutions. Un lien entre la valorisabilité évaluée dès lors et les lignes directrices d’écoconception doit donc être établi pour que le concepteur puisse mieux interpréter les informations auxquelles il est confronté, et simplifier d’autant son processus de conception. Un inventaire de ces guides couplé à une démarche d’écoconception pour la fin de vie permet alors d’identifier différents leviers d’action. Cependant, il n’existe qu’une faible adéquation entre les indicateurs de valorisabilité et les leviers associés aux lignes directrices. Ce travail vise ainsi à proposer une méthodologie outillée d’aide à la décision en conception, basée sur l’analyse multicritère de la valorisabilité du produit et complétée par un guide outillé s’appuyant sur diverses lignes directrices d’écoconception pour la fin de vie. L’approche proposée est validée par l'étude de l’intégration d’un Fairphone® dans la filière des DEEE
Current regulations encourage designers and manufacturers to engage in circular economy and eco-design approaches in order to mitigate the environmental impact of their products. Today, design choices are mainly driven by product recoverability assessment. Guidelines associated with design for X approaches are then used as a decision-making tool for finding solutions. It is therefore necessary to establish a link between the assessed recoverability and eco-design guidelines so that designers can better interpret the information they are given and simplify their design process accordingly. An inventory of these guidelines combined with an eco-design for an end-of-life approach makes it possible to identify the associated levers for action. However, there is only minimal correlation between recoverability indicators and the levers associated with the guidelines. Therefore, this proposal aims to build an indicator-based decision-making design methodology based on a multi-criteria analysis of the product's recoverability. It is enhanced by a tooled guide based on eco-design for end-of-life guidelines. The proposed approach has been validated through the study of a Fairphone® included in the WEEE recycling chain