Ethical Issues In Care Research Articles

Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)–A Personal View

The management of Neuronal Ceroid Lipofuscinoses (NCL), a group of genetic neurodegenerative disorders mainly affecting brain and retinas, raises difficult questions for physicians and other professionals in research, pharmaceutical industry, and public health. Ethical problems in medicine cannot be solved by rational deliberation or by following formal rules. Two topics of ethical issues in the field of NCL are presented here. One group relates to the care of individual patients and centers on a life with dementia at a young age. Advanced care planning for the end of life and the use of life-prolonging measures require challenging assumptions in the best interest of a patient. A second group of questions relates to new treatments. Impressive novel putative causal therapies, such as enzyme replacement for CLN2 disease, may be only disease-modifying and carry the risk of changing a deadly disease of short duration into one with prolonged survival and poor quality of life. The wish for better therapeutic interventions in life-limiting diseases has to take such risks, but more experience is needed before definite conclusions can be drawn. The appropriateness of presymptomatic screening for a severe disease, e.g., must be carefully evaluated to avoid the disastrous experience made with the rash start of newborn screening for Krabbe disease. The ethical issues described and commented in the article reflect the personal experience of a pediatrician who has studied clinical and research questions in NCL for four decades. They should alert various professionals to the necessity of taking their own decisions in situations that are caused by rare progressive brain diseases of young persons, as typified by the NCL.

Planned Teaching Program on Knowledge and Practice Regarding Legal and Ethical Issues in Care of Children

Planned Teaching Program on Knowledge and Practice Regarding Legal and Ethical Issues in Care of Children

Planned Teaching Program on Knowledge and Practice Regarding Legal and Ethical Issues in Care of Children

Planned Teaching Program on Knowledge and Practice Regarding Legal and Ethical Issues in Care of Children

Meeting in a 'free-zone': Clinical ethical support in integrated heart-failure and palliative care.

Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams. Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare. The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis. The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints. Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.

The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review.

Dealing systematically with ethical issues in amyotrophic lateral sclerosis (ALS) care requires an unbiased awareness of all the relevant ethical issues. The aim of the study was to determine systematically and transparently the full spectrum of ethical issues in ALS care. We conducted a systematic review in Medline and Google Books (restricted to English and German literature published between 1993 and 2014). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in ALS care. The literature review retrieved 56 references that together mentioned a spectrum of 103 ethical issues in ALS care. The spectrum was structured into six major categories that consist of first and second-order categories of ethical issues. The systematically derived spectrum of ethical issues in ALS care presented in this paper raises awareness and understanding of the complexity of ethical issues in ALS care. It also offers a basis for the systematic development of informational and training materials for health professionals, patients and their relatives, and society as a whole. Finally, it supports a rational and fair selection of all those ethical issues that should be addressed in health policies, position papers and clinical practice guidelines. Further research is needed to identify ways to systematically select the most relevant ethical issues not only in the clinical environment, but also for the development of clinical practice guidelines.

A cross cultural review of the ethical issues in dementia care in Kerala, India and The Netherlands

The paper explores the diverse ethical issues in the care of persons with dementia, in the Netherlands and Kerala, India. These cross-cultural data are used to suggest newer ways for addressing the ethical issues in a mutually enhancing manner. A thorough review of the literature focusing on ethical aspects of the care for persons with dementia. The medical paradigm is dominant in the Netherlands and awareness of dementia as an organic brain disease is low in Kerala. Institutionalized care is more common in the Netherlands and home-based care is the norm in Kerala. Institutional care is costly, whereas home-based care is stressful for caregivers. The advanced directive plays an influential role in the Netherlands, but this mechanism is yet to evolve in Kerala. The legal and social setting of the Netherlands has a strong influence on physician decision-making concerning end of life issues. In Kerala, discussion of these matters is nearly unknown. Limited awareness of dementia in Kerala should be addressed in public forums, which can then be used to garner governmental support. The predominantly institutional model of care-giving in the Netherlands and home-based care-giving in Kerala, each have their strengths; policy makers in both societies can usefully apply the values and merits inherent in both models. A culturally appropriate implementation of the advanced directive will have beneficial medical, social, and economic impacts in Kerala. The remarkable disparity between the Netherlands and Kerala in dealing with end-of-life issues will allow more philosophically and socially informed ways of addressing the ethical questions that arise in those situations.

Nursing competencies for spiritual care

The aim of this paper is to reveal the main nursing competencies for spiritual care, which emerged from data collecting from qualified nurses in Malta. For nurses to deliver spiritual care, they must be competent to provide care on a physical, mental, social and spiritual level. As spiritual care may be influenced by culture, this study explored the competencies for spiritual care from the Maltese nurses' perspective. A descriptive exploratory study investigated nurses' competencies in the delivery of spiritual care to patients with myocardial infarction. Data were collected by means of an open-ended questionnaire on qualified nurses (n=77) followed by an in-depth interview on a stratified random sample (n=14) of nurses from the same respondents. The four main nursing competencies identified were associated with the role of the nurse as a professional and as an individual person; delivery of spiritual care by the nursing process; nurses' communication with patients, inter-disciplinary team and clinical/educational organizations and safeguarding ethical issues in care. This study demonstrated the complexity of spiritual care, which requires nurses to increase their awareness of the uniqueness of each individual patient with regard to the connection between mind, body and spirit; the assessment of the spiritual status of patients during illness and the implementation of holistic care as recommended by the Nursing Code of Ethics. These findings will enable nurses to consider the importance of spiritual care, which may allow them to help empower patients find meaning and purpose during times of illness. More emphasis should be put on spiritual care in the pre- and postregistration education. Further research to translate these main competencies into specific competencies will guide spiritual care.

Storied ethics: conversations in nursing care.

The purpose of this article is to discuss narration of ethical themes in nursing care. The text represents part of the findings of an ethnographic study aimed at description of everyday work on an oncology ward. Nurses on this ward are constantly involved in ethical care issues and narratives are told to share experiences. Of vital importance in ethical decision making is the perpetual creation of a mediating moral world constituted by daily experience. The need for making space in nursing for a continual learning conversation is expressed and in this I include writings of nursing theorists.