Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team (...) of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region. The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum. (shrink)

Background Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges. Aims To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves. Research design A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and points (...) of view. Participants and research context Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network. Ethical considerations The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded. Findings The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care. Conclusions Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies. (shrink)

The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence (...) are inconsistent with the causes for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication, and ethical decision-making, without the added demand to end the Liverpool Care Pathway would have resulted in a genuine advance in end of life care. (shrink)

_Human Dignity in Bioethics _brings together a collection of essays that rigorously examine the concept of human dignity from its metaphysical foundations to its polemical deployment in bioethical controversies. The volume falls into three parts, beginning with meta-level perspectives and moving to concrete applications. Part 1 analyzes human dignity through a worldview lens, exploring the source and meaning of human dignity from naturalist, postmodernist, Protestant, and Catholic vantages, respectively, letting each side explain and defend its own conception. Part 2 moves (...) from metaphysical moorings to key areas of macro-level influence: international politics, American law, and biological science. These chapters examine the legitimacy of the concept of dignity in documents by international political bodies, the role of dignity in American jurisprudence, and the implications—and challenges—for dignity posed by Darwinism. Part 3 shifts from macro-level topics to concrete applications by examining the rhetoric of human dignity in specific controversies: embryonic stem cell research, abortion, human-animal chimeras, euthanasia and palliative care, psychotropic drugs, and assisted reproductive technologies. Each chapter analyzes the rhetorical use of ‘human dignity’ by opposing camps, assessing the utility of the concept and whether a different concept or approach can be a _more_ productive means of framing or guiding the debate. (shrink)

A paper was published in 2003 discussing the ethics of nurses participating in executions by inserting the intravenous line for lethal injections and providing care until death. This paper was circulated on an international email list of senior nurses and academics to engender discussion. From that discussion, several people agreed to contribute to a paper expressing their own thoughts and feelings about the ethics of nurses participating in executions in countries where capital punishment is legal. While a range of (...) opinions were presented, these opinions fell into two main themes. The first of these included reflections on the philosophical obligations of nurses as caregivers who support those in times of great need, including condemned prisoners at the end of life. The second theme encompassed the notion that no nurse ever should participate in the active taking of life, in line with the codes of ethics of various nursing organisations. This range of opinions suggests the complexity of this issue and the need for further public discussion. (shrink)

‘Terminal discharges’ are carried out in Singapore for patients who wish to die at home. However, if due diligence is not exercised, parallels may be drawn with euthanasia. We present a theoretical discussion beginning with the definition of terminal discharges and the reasons why they are carried out in Singapore. By considering the intention behind terminal discharges and utilising a multidisciplinary team to deliberate on the clinical, social and ethical intricacies with a patient- and context-specific approach, euthanasia is avoided. It (...) is hoped that this will provide a platform for professionals in palliative medicine to negotiate challenging issues when arranging a terminal discharge, so as to avoid the pitfall of committing euthanasia in a country such as Singapore where euthanasia is illegal. It is hoped that a set of guidelines for terminal discharges may someday be realised to assist professionals in Singapore and around the world. (shrink)

This article proposes a retrospective analysis of a compassionate use, using a case study of request for Avelumab for a patient suffering from Merkel Cell Carcinoma. The study is the result of a discussion within a Provincial Ethics Committee following the finding of a high number of requests for CU program. The primary objective of the study is to illustrate the specific ethical and clinical profiles that emerge from the compassionate use program issue. The secondary goals are: a) to promote (...) a moral reflection among physicians who require approval for the CUP and b) provide the basis for recommendations on how to request CUP. The instruments for carrying out the analysis of the case study and the discussion are as follows: Analysis of the audio-recording of the EC meeting regarding the selected Case study. In-depth discussion of topics that emerged during the meeting by means of administration of 5 semi-structured interviews with 2 doctors involved in the case and with 3 components of the EC who played a major role in the EC internal discussion. In an exploration of emerging clinical and ethical issues, four primary themes arise: 1. efficacy, safety of the treatment and patient’s quality of life; 2. clear, realistic, adequate communication; 3. right to hope; 4. simultaneous Palliative Care approach. The results of ethical analysis carried out concern two areas: 1) ethical profiles relating to the use of CUP; 2) the role of the EC concerning the compassionate use of drugs and the need to provide recommendations on how to request CUP. With the aim of implementing these conclusions, the provincial EC of Reggio Emilia chose to steer the request for drugs for compassionate use through recommendations for good clinical and ethical practice based on the following assumptions: 1) the “simultaneous care” approach must be preferred. Secondly, 2) the EC’s assessment must be part of the decision-making process that the care team conducts before proposing compassionate use to the patient. (shrink)

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity (...) and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Taking Sides: Clashing Views in Death and Dying ed. by William J. Buckley and Karen S. FeldtZoe BernatskyTaking Sides: Clashing Views in Death and Dying Selected, edited, and with introduction by William J. Buckley and Karen S. Feldt new york: mcgraw-hill, 2013. 576 pp. $63.00If you are searching for a textbook that inspires students to think critically by examining diverse positions around contemporary bioethics issues related to death (...) and dying, Taking Sides: Clashing Views in Death and Dying is an engaging and effective learning tool that is well structured and a compelling read. As part of a series of Taking Sides textbooks, this volume examines eighteen issues clustered around seven themes: (1) end-of-life decision making; (2) caregiver end-of-life decision making; (3) treatment requests and decisions regarding pain and futility; (4) assisted suicide; (5) determining definitions of death; (6) hospice, policy, and costs of dying; and (7) dying and death as cultural performances. Units for each theme include an introduction, pro and con arguments, a summary, and a list of additional resources.The book offers a wealth of wisdom through thought-provoking scenarios, forward-looking themes, and scholarly articles. Readers are presented with real-life controversies, such as how depression or advanced directives influence the [End Page 214] end-of-life decision-making process, and how advocates affect the quality of end-of-life care. Other topics covered include the right to effective pain management, the use of palliative sedation for intractable symptoms, and withholding or withdrawing futile treatment including artificial nutrition and hydration. Also debated are concerns surrounding the provision of assisted suicide and the criteria for establishing brain death; issues regarding access to hospice; the impact of identifying with a specific religious orientation; and the reception of culturally competent care.Individuals are often forced abruptly into end-of-life decisions without time for extensive reflection about the meaning of life and death. The weightiness of the outcomes and the intensity of the experience, combined with the apprehension so many of us feel about death and dying, can overwhelm individuals and families. This book promotes thoughtful deliberation about such matters from both professional and personal perspectives. The inclusion of a section on caregiver decision making that highlights compassion fatigue is a unique and valuable contribution to the overall topic. Social, cultural, and religious influences that increase comfort (or pain) in dying patients and the unique experience of grief for those who remain are also given attention.The greatest strength of this text is the “Taking Sides” approach, which introduces the reader to divergent positions on ethical issues. The articles are well selected from recent scholarship and orient readers who may be unfamiliar with medical and ethical terminology and concepts. The presentation of contradictory positions demonstrates the true-to-nature complexity of ethical decisions and inspires the reader to further reflection, and the extensive list of resources provides a rich opportunity for further study. The book is an easy read, and the units and themes can be surveyed independently, making it a helpful resource for introductory courses on moral theology or ethics; a digital “Instructor’s Resources Guide” provides sample questions for academic purposes. Since death and dying is a universal issue, the anticipated audience is extensive.While this text provides an excellent introduction to the ethical dilemmas around death and dying, there are particular areas that are not addressed, such as decision-making in the case of neonates, children, or those with preexisting psychiatric disorders or other disabilities. A valuable addition to the book would have been the presentation of a framework for dealing with the complex challenges of death and dying, such as the virtue ethics framework offered by Lydia Dugdale in the 2015 publication Dying in the Twenty-First Century. But although the book does not add new material to existing debates, the clarity with which it presents each argument will help to orient those less familiar with bioethical issues. [End Page 215]Zoe BernatskyNewman Theological CollegeCopyright © 2016 Society of Christian Ethics... (shrink)