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Professor Mary Chiarella, Australia
TOPIC: 'Government Policy in end-of-life care'
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Professor Mary Chiarella is Professor of Nursing at the University of Sydney, Australia. Her previous positions include: Chair of the Australian Nursing and Midwifery Council from (2007-2009), Chief Nursing Officer, NSW Health Department (2003/2004) and Foundation Professor of Nursing in Corrections Health, with the University of Technology, Sydney. Professor Chiarella has served as a member of the NSW Law Reform Commission Division Working Group on minor's consent to medical treatment and was a founding member of the Australian Bioethics Association and the Australian Institute for Health, Law and Ethics. She is currently serving as a member of the Clinical Ethics Advisory Panel for NSW Health; the NSW nominee on the Nurses and Midwives Board of Australia (NMBA); Chair of the Policy Working Group of NMBA and has just been appointed as one of the Federal Minister for Health's three independent members on the Board of Health Workforce Australia. Professor Chiarella particular research interests focus on legal, policy and ethical issues in nursing and health care delivery, on which she has published and presented widely in both national and international forums. She is also the author of Policy in End-of-Life Care: Education, ethics, practice and research (2006; Quay Books, London).
Professor Megan-Jane Johnstone, Australia
TOPIC: 'Moral risk, moral luck and moral safety in end-of-life decision-making: the challenge of uncertainty'
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Professor Megan-Jane Johnstone is Professor of Nursing in the School of Nursing and Midwifery, and Director of the Centre for Quality and Patient Safety Research at Deakin University, Melbourne. She is renowned internationally for her scholarly research in the areas of nursing and health care ethics, with a particular focus on health and human rights, cross-cultural ethics, patient safety ethics, professional conduct, and end-of-life ethics including end-of-life decision-making in an aging society. Among her many roles, Professor Johnstone is currently serving as a nominated Consultant (Ethics and Human Rights) to the International Council of Nurses, Geneva and a member of the Governing Council of the International Centre for Nursing Ethics (Surrey, UK). She has also previously served as an invited member of the Australian Commission on Safety and Quality in Health Care, National Patient Charter Reference Group (2007-2008) and as an invited Opinion Leader, Palliative Care Australia, National End of Life Care Framework Forum (2009-2010). Professor Johnstone has published numerous journal articles, book chapters and commentaries on nursing and health care ethics, and is the author of several books, including the internationally acclaimed: Bioethics a nursing perspective (Elsevier Science, released as a fifth revised edition in 2009), Nursing and the injustices of the law (WB Saunders/Bailliere Tindal 1994), and the ICN commissioned text Ethics in nursing practice: a guide to ethical decision making (2008), (co-authored with Sara T. Fry). Professor Johnstone writes a bi-monthly column on nursing ethics for the Australian Nursing Journal and is also the author of a new book (due April 2013), titled: Alzheimer's disease, media representations and the politics of euthanasia: constructing risk and selling death in an aging society (by Ashgate, Surrey).
Professor Chris Gastmans, Belgium
TOPIC: 'Palliative Sedation: Nursing Ethics Perspectives'
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Professor Chris Gastmans is Professor of Medical Ethics in the Faculty of Medicine, KU Leuven. Since 2002, Professor Gastmans has been serving as the Secretary-General of the European Association of Centres of Medical Ethics (EACME). He has lead several research projects investigating: the ethics of care, nurses' involvement in euthanasia, written ethics policies on euthanasia in healthcare institutions, nurses' involvement in withholding/withdrawing artificial food and fluid administration, nurses' ethical behaviour and physical restraints in hospitals, and risk, luck, and responsibility in health care. He has also coordinated an EU research project on 'Ethical Codes in Nursing: European Perspectives on Content and Functionin'. Professor Gastmans is member of the Editorial Board of Nursing Ethics (SAGE, London) and Nursing Philosophy (Blackwell Publishing, Oxford). His most important books are Between Technology and Humanity (Leuven University Press, 2002) and Justice, Luck and Responsibility in Health Care (Springer, 2012). He has also published numerous articles in international journals and books on end-of-life care ethics, elderly care ethics, empirical ethics, ethics of care, and nursing ethics.
Dr Olga Kanitsaki, AM, Australia
TOPIC: 'Cross-cultural considerations in ethical end-of-life care: the importance of context'
Abstract (pdf, 14 KB)
Dr Olga Kanitsaki, AM, is a distinguished Australian nurse whose nursing careers spans over 40years, of which the last 22 years was spent in the higher education sector. Appointed as Australia's first Professor of Transcultural Nursing in 2000 (RMIT University), a position from which she formally retired in 2005, Dr Kanitsaki has been a long-standing and outspoken advocate of cross-cultural considerations in healthcare and nursing. In 1995, Dr Kanitsaki was recognised nationally for her work when made a Member of the Order of Australia (AM) (New Year's honours list) for her 'service to nursing and in particular her devotion to developing a multi-cultural health service of benefit to all'. Dr Kanitsaki has co-published extensively on cross-cultural issues in healthcare, focusing on such topics as patient engagement in patient safety, the link between culture, language and patient safety, racism in health care, policy imperatives in cross-cultural care, and advance care planning in a multicultural society. In 2012, Dr Kanitsaki received further recognition of her work when the Centre for Cultural Diversity and Aging launched a new award in her name: the 'Dr Olga Kanitsaki Award for Individual Excellence awarded to an individual who has demonstrated exceptional commitment and initiative in the delivery of culturally inclusive care' (Centre for Cutlural Diversity in Ageing).
Dr Joan McCarthy, Ireland
TOPIC: 'An Ethical Framework for End-of-Life Care: An Irish Perspective'
Dr. Joan McCarthy is a College Lecturer in Healthcare Ethics in the School of Nursing and Midwifery, University College Cork, Ireland. She also lectures in the Royal College of Surgeons in Ireland and the Medical University of Bahrain. Dr McCarthy is a member of the Irish National Advisory Committee on Bioethics, the editorial board of Nursing Ethics and the International Centre of Nursing Ethics. She has collaborated on a number of national and international research projects in healthcare ethics and has a consultative role on several committees involved in clinical care and health research. Her research interests are wide-ranging in healthcare ethics but she is particularly interested in theoretical and empirical research in two areas: ethical issues that arise in relation to death and dying (e.g. decisions in relation to patient consent and life prolonging treatment); and feminist approaches to ethical decision-making. Notable amongst her publications are: End-of-Life Care: Ethics and Law (with M. Donnelly, D. Dooley, L. Campbell and D. Smith; Cork University Press 2011); An Ethical Framework for End-of-Life Care, 8 Study Sessions (with M. Donnelly, D. Dooley, L. Campbell and D. Smith, Irish Hospice Foundation, Dublin 2010, available at Hospice Friendly Hospitals; Nursing Ethics, Irish Cases and Concerns (with D. Dooley, Gill and MacMillan 2012); and Dennett and Ricoeur on the Narrative Self (New York: Humanity Books, 2007). Dr McCarthy is the lead author of the cross-discipline report on the Irish ethical framework for end-of-life care.
Associate Professor Alison Hutchinson, Australia
TOPIC: 'The role of evidence in informing ethical practice and policy'
Dr Hutchinson is Associate Professor of Nursing at Deakin University School of Nursing and Midwifery and the Cabrini-Deakin Centre for Nursing Research at Cabrini Health. Prior to this appointment she trained as a Postdoctoral Fellow in the Knowledge Utilization Studies Program (KUSP) at the University of Alberta, Canada (2007-2009) with the support of a national fellowship from the Canadian Institutes of Health Research (CIHR) and a provincial fellowship from Alberta Innovates Health Solutions (formerly Alberta Heritage Foundation for Medical Research (AHFMR)). Associate Professor Hutchinson has received nationally competitive funding in Canada and Australia. She is a member of the Editorial Boards of Worldviews on Evidence-Based Nursing and Implementation Science. Associate Professor Hutchinson has a master in Bioethics, has authored several scholarly book chapters and has published extensively in high quality peer reviewed journals. Her main research interests centre on knowledge translation (research utilisation) in the healthcare setting with a particular emphasis on the influence of organisational context and interdisciplinary interaction on the uptake of research evidence by health professionals.
Special Interest Plenary Session
Dr Emiko Konishi, Japan
Topic: Nurses responsibilities in radiation emergency
Background: In extreme emergency situations, nurses are challenged by tensions: A) good for this particular patient, and B) good for many other people. Problem to be addressed: This paper discusses nurses' values and responsibilities in radiation emergency using cases in the following historical events that Japan experienced. 1. Atomic bombing in Hiroshima-Nagasaki, 1945: Throughout their lives, the nurse survivors, now in their 80s or 90s, have held guilt feelings for not giving care to dying people in order to save people with a better chance of survival, or not being able to work because of their own radiation sicknesses. 2. Fukushima Nuclear Power Plant accident, 2011: In the evacuation process, a nurse administrator, with her whole hearted caring for one particular patient, did not see the larger context and therefore failed to enact her more important professional responsibility: good for many other people. 3. Nuclear fuel facility accident, 1999: In transporting the most severely exposed worker, he was wrapped in a plastic sheet to protect the environment and people from possible spread of radioactive contamination from his body surface. What lacked here was appropriate nursing care for the dignity, comfort and life of this seriously injured individual, which could have protected the environment and many other people at the same time. Conclusions: The three nuclear emergency cases challenge nurses to discern their most important values and responsibilities from many other demands. Needs for triage ethics teaching (Case 1 and 2), and having awareness of individual (case 3) will be discussed.
Dr Wadea Beheri, Saudi Arabia
Topic: End of Life Care Dilemmas in Saudi Arabia
Background: International nurses from diverse cultural backgrounds care for patients in Saudi Arabia, where the patients are of Arab Muslim cultural background. In this health context, traditions play a significant role in the practices and beliefs of patients and families. These traditions often create ethical dilemmas for the nurses, as their professional and cultural values may conflict with the traditional norms in situations such as End of Life Care. Problem to be addressed: In Saudi Arabia, the family assumes the role of 'protector' of the patient; and is usually the key decision maker in care decisions. It is tradition that, as a form of 'protection' the family may request the physician to withhold the diagnoses or prognoses from the patient at end of life, thus creating a dilemma for nurses unable to discuss end of life caring with the patient. In addition, nurses from different cultural backgrounds may view decisions on prolongation of life as causing unnecessary suffering; while the family places high value on preservation of life. This presentation will use case studies to demonstrate strategies to deal with the cultural traditions, family roles and dynamics during End of Life Care in Saudi Arabia. Through these strategies, the nurses are able to provide effective End of Life Care based on the patients and family needs. Conclusion: Understanding the traditions and beliefs of their patients assists the nurse to bridge cultural differences for effective End of Life Care.
Dr Isabel Amelia Costa Mendes, Brazil
Topic: Ethical aspects regarding satisfaction of patients
Health institutions may be considered complex organizations and need to be prepared to fulfil patients' needs. These organizations are different from others, because if patients had the chance to choose, they would not use the services of a hospital. In addition, the patients, as clients of the organization, will not be able to choose the products and services they will use during hospitalization. In spite of being the clients, generally the ones who decide about their treatment are health professionals. Therefore, it is a real challenge to provide nursing care based on competencies, efficiency and ethics, especially in the end of life situations. This reflection aims at emphasizing the relevance of ethical aspects of nursing action involving the satisfaction of patients with nursing care. In this study, authors discuss nurses' responsibility to perform based on ethics regarding their commitment to manage and provide care with quality. In this context, it is crucial to offer credible information to clients, to respect rules and care routines as well as to educate patients aiming at improving their enrolment in decisions regarding their own care. We believe that to consider these assumptions means to transform the managerial and care roles of nurses, whom will observe attitudes which were not usually prioritized in the majority of health services.
Dr Elizabeth Crock and Liz Craig, Australia
Topic: HIV nursing ethics: practice and policy imperatives
Background: 30 years into the HIV epidemic, with access to effective treatments, most people living with HIV (PLHIV) live longer, with a third of PLHIV in Australia now over fifty. But despite effective treatment, many PLHIV experience accelerated ageing, cognitive impairment, mental health problems and co-morbidities. The epidemic is increasingly diverse, including long-term survivors, women, heterosexuals and refugees. Problems to be addressed: PLHIV remain a vulnerable group, with specific needs and strengths that require careful consideration by nurses in addressing ethical issues that arise as they age or face end-of-life decisions. For instance, historical experiences of stigmatization and discrimination in health care and/or in the broader culture, can affect PLHIV's access to aged care services. Current discrimination against ageing gay, lesbian, transgender and intersex people can render them invisible within health services - they fear maltreatment if they disclose their sexuality or gender identity. Identity concealment, and conversely, inadvertent disclosure of sexuality or HIV status, affect access to, experience within, and quality of care. Some PLHIV thus do not feel culturally or morally safe within health and aged care. Cognitive impairment and risks of life-threatening complications make planning for end-of-life decisions critical. Conclusions: Nursing practice and policy must explicitly address the needs of PLHIV. Drawing from literature and narratives of PLHIV confronting ageing and end-of-life decisions, this paper highlights ethical issues arising in current HIV nursing practice. Strategies for enhancing policy and practice that validate, make visible, and are responsive and respectful of the specific needs of PLHIV are proposed.
Ms Karen Glaetzer and Dr Sue Haynes, Australia
Topic: End of life management in acquired brain injury
A case study approach will be used to highlight the end of life decision making issues for an individual who has a long term acquired brain injury in a long term care facility. The focus will be on the role for specialist palliative care providers in this process. The case involves a woman in her mid-30's, who 7 years after a MVA remained in a persistent vegetative state. The family had been granted guardianship after finally reaching agreement to cease medically-assisted feeding via a PEG tube, but this decision was being challenged by some of the health providers involved in her care. Health professionals caring for individuals in long term care often have difficulty making ethical decisions or those in the person's best interest, due to their familiarity with the individual and their family. They often take on the role of surrogate family and lose objectivity, resulting in them rating their needs higher than those of the family. Specialist palliative care providers are able to come in with “a fresh set of eyes” on the situation and assist to work through the issues in a systematic way, taking into account both the ethical and legal obligations, ensuring a positive outcome for a tragic situation is achieved.
Mr Dana Ieraci, Australia
Topic: Advance Care Planning in Aged Care: An Australian Study
Purpose: This study, situated at a residential aged care facility (RACF) in metropolitan Melbourne, explored and described service providers' knowledge, understanding, perceptions and experiences of advance care planning (ACP). Research suggests that ACP programs have been implemented poorly in Australian RACF's. As the gatekeepers of ACP, service providers could provide valuable insights into what may enable or disable the effective implementation of ACP programs in RACFs. Method: Conducted as a qualitative exploratory descriptive (QED) inquiry, a purposeful sample of 17 service providers, including managers, nurses, and personal care assistants were recruited. Data were collected via conversational semi-structured interviews, then analysed using content and thematic analysis strategies. Findings: Findings indicate service providers had varying levels of knowledge and understanding of ACP. Additionally there was a notable mismatch between participants' perceptions and experiences of ACP, which was strongly linked to what participants identified as disablers to ACP, notably: organisational constraints; time constraints; stakeholder's fear of death; family conflict; and cognitive impairment in the elderly, which overwhelmed the successful implementation of ACP at the RACF. In spite of the difficulties identified, staff nevertheless believed that ACP enhances end-of-life care and that to ensure a more effective uptake a more considered approach with a focus on building trusting relationships with clients was warranted. Conclusions: Based on the findings of this study a review of current ACP practices in RACFs and further research on the disablers of ACP discussions within RACFs are warranted.
Dr Sandy Lovering, Saudi Arabia
Topic: Nursing Ethics: A Middle East Perspective
Background: Culture determines the personal and professional values and beliefs that guide nurses' ethical reasoning. The majority of nursing ethics literature is grounded in the Western belief system. Within the context of caring for patients in Saudi Arabia and other Middle Eastern cultural contexts, the beliefs and values that impact on ethics are derived from the cultural backgrounds of the health care team and the patient. Ethical dilemmas are more complex with the overlay of multiple cultural beliefs and ethical frameworks. Problem to be addressed: Similarities and differences exist between Western and Islamic ethical principles that influence nurses ethical reasoning in this complex cultural environment. Western nursing ethics emphasize the value of autonomy, and include the principles of beneficence, non-malfeasance, justice, confidentiality, fidelity and veracity. Islamic ethical principles emphasize duty and obligation to preserving the Islamic faith and the sanctity of life; and share similarly in the principles of beneficence, non- malfeasance, and justice. This presentation will discuss the similarities and differences in Western and Muslim ethical perspectives in the clinical setting. The use of a culture specific nursing model to guide nurses to reflect on ethical dilemmas within this complex cultural environment will be given. Examples of the model applied in specific ethical situations (such as end of life care, organ transplantation) in the Middle East will be highlighted. Conclusion: A culture specific nursing model can assist in bridging understanding between nurses from different cultures in resolving ethical issues at the bedside.
Dr Constance Milton, United States
Topic: The ethics of defining quality of life
Abstract: The concept of quality of life is a popular, confusing taxonomy of definitions that lacks consensus for practice applications in healthcare disciplines. Usage of the term is infused with diverse and inconsistent meanings in contemporary healthcare literature. This article begins a discussion regarding the ethical implications for current usage of the concept in professional healthcare literature. Potential opportunities-limitations in professional nurse practice will be undertaken. The theoretical lens of the human becoming ethical tenets shall undergird the exploration and articulation of potential meanings of the concept.
Dr Douglas Olsen, United States
Topic: Decision-making capacity and mental disorder
Accurate, consistent assessment of decision-making capacity (DMC) is essential to ethical treatment of patients. DMC determines how patient rights and protections are applied. A patient deemed to have DMC has broad freedom to accept or refuse even life-saving treatment. Patients deemed to lack DMC can be compelled to undergo treatment to which they object. The ability to assess DMC in patients with mental disorder is increasingly essential in the US as the use of psychiatric advanced directives grows. Forced psychiatric treatment based on the patient's advanced directive depends on assessment of DMC while commitment laws depend on assessment of danger regardless of DMC. In addition, recent health care legislation in the UK places emphasis on assessment of DMC. Assessment of DMC in persons with mental illness presents specific difficulties found less frequently and often to a lesser degree in medically ill patients, including specific rather than global cognitive deficits, appreciation altered by mood, and ability to articulate objections. In addition, patients with mental disorder may be subject to bias and stigma regarding how their disorder influences DMC. Despite the dire consequences of assessing DMC poorly there are currently no educational standards for teaching the assessment of DMC to nurses, advanced practice psychiatric nurses, physicians or psychiatrists. Further, policy is unclear regarding qualifications needed to assess DMC. The presentation will review evidence regarding DMC and mental disorder and make recommendations for the profession's response to the issue.
Prof Katsumasa Ota, Japan
Topic: Development of International Patient Dignity Scale
Co-authors: Chan Moon Fai (Singapore), Jukai Maeda (Japan), Tiew Lay Hwa (Singapore), Michiko Yahiro (Japan), Akiko Eguchi (Japan), Yukari Niimi (Japan), Takako Yamaguchi (Japan), Masami Matsuda (Japan)
Purpose: Dignity is an important theme in nursing. Since 2010, we have been developing an international Patient Dignity Scale (iPDS) to assess patients' expectations and satisfaction in relation to dignity. This paper reports the second stage of our work: the development of an English version for international use. Method: With the permission of Japanese and Singaporean institutional review boards, we conducted a self-administered questionnaire survey of 430 inpatients of a midsized hospital in Singapore. The questionnaire contained 36 items and was based on the Japanese version that originally consisted of 23 items in four categories and measured patients' expectations of dignity in care environments. Exploratory factor analysis was conducted to examine common factors and check the meaning of each item. Results: We obtained 363 valid responses. Dignity comprised five factors: (1) respect as a human being, (2) respect for personal feelings and time, (3) respect for privacy, (4) respect for justice and fairness, and (5) respect for autonomy. The items regarding satisfaction totalled 29, and items regarding expectation totalled 30. Their Cronbach's alpha coefficients were 0.936 and 0.953, respectively. Conclusion: We developed a new iPDS with considerable reliability and validity. However, there are several points to be improved. Due to unclear questions or unfamiliarity with care environments, many deficit answers were given resulting in 16% of responses being invalid. Ceiling effects of the answers were observed in more than half of all items. We plan to conduct the next survey in the UK to resolve these problems.
Maria Cristini Paganini and Regiane de Fátima Kleina, Brazil
Topic: Health Professionals experience in end-of-life
The advance in diagnosis and treatment techniques for adult cancer turned to better life quality and cure possible for oncology patients. However, some types of cancer still hard to control, a fact that turns death a present probability. Purpose: In this sense, the purpose of this study developed in a large public and teaching hospital in the city of Curitiba, Brazil, aimed to identify the feelings of health professionals facing the end of life of cancer patients; to report the health professionals' experience in caring for patients with cancer; to relate the reality experienced by these professionals with the literature. Method: A qualitative method was selected. Participants were invited after explanation and discussion about the details of the study. Data were collected through semi-structured taped interviews with ten health professionals from the oncology unit. Results/Findings: Based on a survey of a qualitative nature (as proposed by Bardin), following categories emerged: a) The relationship between the health professionals and the patient as a facilitator to care in the patient's dying process; b) The differences embedded in multidisciplinary care when faced with the dying process and c) Experience of health professional team in the end-of-life process: a mix of positive and negative feelings. Conclusions: Even though health professionals deal with very sick patients in their everyday practice, they lack preparation in dealing with situations involving end-of-life. The relation between health professional, patient and family reinforce the necessity in which the team create strategies for comforting and caring for the patients.
Maria Cristina Paganini and Priscila Nascimento, Brazil
Topic: Nursing team facing the death of children
Introduction: In paediatric oncology patients with poor prognosis are terminally ill. Death in children awakens feelings that may not become evident in the death of the adult, once it isn't accepted as part of a natural process. Purpose: To understand how nursing team deals with the death of children and adolescents in a paediatric oncology ward. Method: Participants, nursing assistants, technicians and nurses, were invited after explanation and discussion about the details of the study. Data were collected through semi-structured taped interviews with ten nursing teams from the oncology unit. The recordings were transcribed result of the transcripts analysed by Minayo (2003). Results/Findings: Based on a survey of a qualitative nature (as proposed by Bardin), following categories emerged: a) the difficulty of the team facing the suffering of the family, according to the stage of life, b) the sadness of the team when dealing with the death and suffering; c) the experience as a factor that alleviates the pain of loss; d) death seen as something natural; e) the time to death: the difference between chronic and acute events; f) death related to spirituality. Conclusions: Nursing has difficulties in dealing with the suffering that death may cause. Experience with grief, death and spirituality appear as expected factors mitigated this suffering, but the team still needs better preparation for dealing with death, grief, and loss. By understanding how to deal with the death of children and adolescents who are hospitalised in the oncology unit, the team begins to create new strategies to plan and improve the nursing care. Keywords: oncology patients; death anxiety and ethics; quality of death; suffering; end-of-life and death; dying well.
Dr Catherine Salveson, United States
Topic: POLST: Assuring Patient Preferences at End of life
Background: Choosing among the benefits and burdens of an enlarging array of medical interventions is increasingly important with financial, cultural, psychosocial, and personal implications for patients, families, institutions and society. Premises/Problem: In the US in 1990 the Patient Self-Determination Act was passed to support an individual's right to complete an Advance Directive (AD) to refuse or accept medical treatment and specify future treatment preferences. An AD also allows patients to appoint someone to make decision on their behalf if they cannot. An AD is not binding, and is often overridden by family or health care providers. Ethics consult teams become involved when clear guidance from an AD is not respected. Nurses are caught in the middle of the varied contrary positions of providers and families. This problem was recognized in the 1990s and POLST (Physician Orders for Life-Sustaining Treatment) was developed to reduce medical errors and improve patient care with portable medical orders from patient preferences in ADs. POLST is used by providers including hospitals, emergency medical services and long- term care facilities. POLST assures end-of-life care decisions are honoured as direct physician orders. The problem exists because many patients, facilities, and providers are unaware of the POLST for patients with advanced, chronic progressive illnesses or frailty. Only 15 US states had endorsed POLST program as of August 2012. Conclusions: Nurses are in a unique ethical position to advance the adoption of POLST programs and enlarge the potential that patient's preferences for end of life care will be followed.
Prof Bart Van den Eynden, Belgium
Topic: Palliative Care Pathways: an ethical perspective
Purpose: Although not yet so numerous, care pathways for palliative patients (PCP) are looked at as ideal instruments for palliative care: evidence-based, disease-specific, leading to standardisation, registration and control. But what about the ethical perspective? Methodology: A systematic literature study formed the basis of qualitative research which used face-to-face interviews with philosophers-ethicists and a focus group of caregivers for data collection. Results: The philosophers situated PCP within the context of modern society, searching for certainty; they make the link with the tendency towards fragmentation and 'instrumentation' within health care. PCP are for them valuable means when properly used: they warned for an application just as a rigid checklist and argued to give them their place within the particular relation of the caregiver with the palliative patient. The caregivers considered PCP as 'living' instruments which are helping to create and build a palliative care culture. For them PCP are not a rigid 'armour': they consider PCP as a 'house' with a number of practical and pragmatic advantages (registration, standardisation) but in which also an number of care-ethical values can enrich care. Nevertheless it will always be the caregivers who will have, together with patient and family, to 'furnish this house'. Caregivers are also not blind for barriers as the need for extra time and administration. Conclusion: Using the metaphor of 'the care house' two layers could be considered: a superficial one with a lot of evidence-based principles and a much deeper, bearing layer with care ethical values as having an eye for vulnerability, asymmetry, uniqueness and dependency in the relation. Both layers are essential; the opposition between principle and care ethics seems in the case of PCP a false one; it is not a question of 'or-or' but one of 'and-and'.
Ms Annick Vanderoost, Belgium
Topic: Advance Care Planning at a dialysis ward
Aim: Renal dialysis has a tremendous impact on a patient's life and his environment, and recent evolution in dialysis techniques has faded out the gap between life prolonging treatment and palliative care. Therefore, Advance Care Planning (ACP) seems even more important for renal dialysis patients. This study looked at ACP as a means for 'good' care at the end of life of a dialysis patient and what possible barriers are? Methodology: A systematic literature study formed the basis of qualitative research which used face-to-face interviews and a focus group of caregivers for data collection. Results: ACP is a dynamic process that should not be limited to administrative tasks, such as filling out forms. Key elements are: good communication, provision of information at various stages of the illness, and respect for the autonomy of the patient. At a dialysis ward, the nurse has a very important 'signal' function due to the trust relationship with the patient. However, the same relationship can also be a handicap for delicate conversations. Other barriers are the lack of privacy at the ward and the limited time available to caregivers. Furthermore, DNR decisions are often discussed too late, and caregivers are not aware of the option of stopping the dialysis treatment which results in patients sometimes being dialysed 'too long'. Finally, it is agreed that one collective medical file accessible to all caregivers, and a regular well organised multidisciplinary team meeting would increase the quality of care. Conclusion: It is recognised that there is a need for a joint vision of the entire dialysis team, support of this team by the mobile palliative care teams, and more communication education and training. The first and most important step seems to be that all caregivers of the dialysis ward should realise the importance of ACP.
Dr Martin Woods, New Zealand
Topic: Researching nursing moral distress in New Zealand
Purpose: This presentation offers insights from a recently completed national research project concerning moral distress in nursing, and in particular focuses on those findings that relate to end of life care situations (Woods, Towers, Rogers & LaGrow, 2012). Firstly, there is a general overview of the main findings of the research project. Secondly, there is an exploration of these findings with particular emphasis on those aspects that relate to end of life care. Thirdly, this presentation offers some preliminary suggestions as to how such distress may be alleviated. Method: A national survey of hospital based registered nurses was performed by means of the use of a revised moral distress questionnaire (MDS-R©) that was itself based on similar research tools used by US based nursing researchers (Corley, Elswick, Gorman & Clor, 2001; Hamric, 2012). Results/Findings: The survey provided both quantitative and qualitative data from over 400 registered nurses around the nation. The results were analysed using standard survey analysis techniques, and by thematic analysis. It was found that the top five causes of moral distress amongst New Zealand nurses included two strong indicators that directly relate to end of life care, namely 'carrying out physicians orders for unnecessary tests' and 'initiating extensive actions when only prolonging the dying process.' Conclusions: The higher frequency of distress caused by each main issue was reinforced by very high intensity levels; when explaining the reasons for their distress in these areas, nurses frequently offered material that related to end of life care issues.
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