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Palliative care, ethics

Joseph J Fins, James L Bernat
This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation...
August 7, 2018: Archives of Physical Medicine and Rehabilitation
Douglas Farrow
Developing the ethics of palliative sedation, particularly in contrast to terminal sedation, requires consideration of the relation between body and soul and of the nature of death and dying. Christianly considered, it also requires attention to the human vocation to immortality and hence to the relation between medicine (as aid for the body) and discipline (as aid to the soul). Leaning on Augustine's rendering of the latter, this paper provides a larger anthropological and soteriological frame of reference for the ethics of palliative sedation, organized by way of nine briefly expounded theses...
August 10, 2018: Theoretical Medicine and Bioethics
Anne Marie Sowerbutts, Simon Lal, Jana Sremanakova, Andrew Clamp, Chris Todd, Gordon C Jayson, Antje Teubner, Anne-Marie Raftery, Eileen J Sutton, Lisa Hardy, Sorrel Burden
BACKGROUND: People with advanced ovarian or gastrointestinal cancer may develop malignant bowel obstruction (MBO). They are able to tolerate limited, if any, oral or enteral (via a tube directly into the gut) nutrition. Parenteral nutrition (PN) is the provision of macronutrients, micronutrients, electrolytes and fluid infused as an intravenous solution and provides a method for these people to receive nutrients. There are clinical and ethical arguments for and against the administration of PN to people receiving palliative care...
August 10, 2018: Cochrane Database of Systematic Reviews
Joseph J Fins, James L Bernat
This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation...
August 8, 2018: Neurology
Stefan Grosek, Miha Orazem, Urh Groselj
OBJECTIVES: To describe the process of development of "Slovenian Ethical Recommendations for Decision-Making on Treatment and Palliative Care of Patients at the End of Life in Intensive Care Medicine" and its final outcomes. DATA SOURCES: Personal experience and reflection, complemented by published data. STUDY SELECTION: Not applicable. DATA EXTRACTION: Not applicable. DATA SYNTHESIS: Narrative, experiential reflection, literature review...
August 2018: Pediatric Critical Care Medicine
Gilbert Meilaender
This essay considers whether palliative sedation is or is not appropriate medical care. This requires one to consider (a) whether, in addition to the good of health, relief of suffering is also a proper end of medicine; (b) whether unconsciousness can ever be a good for a human being; and (c) how double-effect reasoning can help us think about difficult cases. The author concludes that palliative sedation may be proper medical care, but only in a limited range of cases.
August 4, 2018: Theoretical Medicine and Bioethics
Jordana Natalie Peake, Emma Beecham, Linda J M Oostendorp, Briony F Hudson, Patrick Stone, Louise Jones, Monica Lakhanpaul, Myra Bluebond-Langner
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions...
July 31, 2018: BMJ Supportive & Palliative Care
Donald O Johnson, Christine G Westphal
In 1968, the neurologic or "brain death" standard for declaration was introduced as an accepted standard for declaration of death in hospitals where heartbeat and breathing are being sustained by technology, but functions of the brain, including the brain stem, have ceased. For many people, this accepted ethical, legal, and medical definition of death by neurologic standards can seem to blur the line between life and death as the heart is still beating, the lungs are still moving air albeit by mechanical ventilation, and the body is still warm...
June 2018: Journal of Hospice and Palliative Nursing: JHPN
Valentina Biagioli, Cesarina Prandi, Brian Nyatanga, Roberta Fida
It is crucial that palliative care nurses feel competent to practice their profession in accordance with ethical principles, to personalize care, to remain sensitive, to ensure respect, and to communicate effectively. The aim of this study was to verify that higher levels of perceived professional competency predict better individual and organizational outcomes, such as job satisfaction and organizational citizenship behavior. An online cross-sectional survey was conducted with 107 Italian palliative care nurses...
August 2018: Journal of Hospice and Palliative Nursing: JHPN
Maribeth H Bosshardt, Patrick J Coyne, Justin Marsden, Zemin Su, Cathy L Melvin
Moral distress affects workplace environment, burnout, employee retention, and patient safety. Palliative care is frequently involved in complex care for patients that may cause moral distress among staff. The goal of this study was to measure change in moral distress among nurses after implementation of a policy that allows nurses to consult palliative care. Before the policy change, data were gathered via email using the Moral Distress Scale-Revised. The scale was redistributed 6 months after implementation of the consult policy...
August 2018: Journal of Hospice and Palliative Nursing: JHPN
Simone Stenekes, Jamie L Penner, Michael Harlos, Marie-Claude Proulx, Erin Shepherd, Stephen Liben, Genevieve Thompson, Grace MacConnell, Marie-Claude Grégoire, Harold Hal Siden
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS)...
July 31, 2018: Journal of Palliative Care
Mary Turner, Marian Peacock, Sheila Payne, Andrew Fletcher, Katherine Froggatt
Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of 'historic' sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody...
September 2018: Social Science & Medicine
Ralf J Jox, Francesca Bosisio, Eve Rubli Truchard
Dementia from a palliative care perspective: why a disease-specific advance care planning is necessary Abstract. Palliative Care has to transform profoundly in the context of population aging in many countries around the globe. It has to collaborate increasingly with geriatric medicine and incorporate geriatric expertise. One of the pivotal challenges of geriatric palliative care is ethically appropriate decision making for patients who have lost decision-making capacity. While the traditional approach to advance directives (living wills) has demonstrably proven ineffective, the new approach that is currently being embraced, including in German-speaking countries, is the systemic process of advance care planning (ACP)...
July 2018: Therapeutische Umschau. Revue Thérapeutique
Heike Gudat
Give the due value to the end of life: the systematic underfunding of specialised palliative care in the Swiss DRG system Abstract. Palliative care is an integral part of modern medicine, improving quality of life, treatment satisfaction, and reducing the costs of care in severe disease. Patients' access should be early, regardless of age, diagnosis and setting, when incurable or advanced disease has been diagnosed. The public expenditure for specialised palliative care units in hospitals can be seen as yardstick for an appropriate palliative care supply, but in Switzerland only a mere fraction of revenues is dedicated to the palliative care units...
July 2018: Therapeutische Umschau. Revue Thérapeutique
Friedemann Nauck
Role of the influence of cultural and religious beliefs on medical end-of-life decision-making Abstract. Decision-making at the end of life must encompass medical indication, therapeutic offer, patient autonomy and consent. Furthermore, physicians must reflect on whether their own cultural and religious beliefs have an influence on their decision-making process. Basic knowledge in palliative care or integration of experts in palliative care may be useful when dealing with patients at the end of life, particularly when shifting treatment goals to palliative or comfort care measures is considered or necessary...
July 2018: Therapeutische Umschau. Revue Thérapeutique
Richard Fitzgerald, Jennifer Gallagher
INTRODUCTION: Maintaining oral health is vital for every individual's quality of life. Little consideration, however, has been given to the oral health of patients approaching end-of-life, perhaps due to sensitivities over research ethics. The aim of this rapid review is to synthesize existing evidence on oral health in this population. METHODS AND RESULTS: A rapid review of the literature was conducted using the key words: "Oral/Dental Health" in "End-of-life" or "Palliative care" patients...
July 19, 2018: Special Care in Dentistry
A J Pols, Bernike Pasveer, Dick L Willems
The concept of dignity is often used in palliative care, and, in particular, as a concept to illustrate what is important to those involved. However, philosophers, ethicists and laypersons cannot agree on what dignity actually is. In this paper, we analyse what caregivers told us about situations in which they thought dignity was at stake. From two focus group meeting of health care professionals concerning the end of life, we learned that dignity could mean different things, but that there were also shared themes...
April 30, 2018: Nederlands Tijdschrift Voor Geneeskunde
Barbara A Jack, Tracy K Mitchell, Mary R O'Brien, Sergio A Silverio, Katherine Knighting
BACKGROUND: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place...
July 13, 2018: BMC Palliative Care
Xavier Gómez-Batiste, Carles Blay, Marc Antoni Broggi, Cristina Lasmarias, Laura Vila, Jordi Amblàs, Joan Espaulella, Xavier Costa, Marisa Martínez-Muñoz, Bernabé Robles, Salvador Quintana, Joan Bertran, Francesc Torralba, Carmen Benito, Nuria Terribas, Josep Maria Busquets, Carles Constante
Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management...
January 1, 2018: Journal of Palliative Care
Sung Joon Shin, Jae Hang Lee
The Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life came into effect on February 4th, 2018, in South Korea. Based on the Act, all Koreans over the age of 19 years can decide whether to refuse life-sustaining treatments at the end of life via advance directive or physician orders. Hemodialysis is one of the options designated in the Act as a life-sustaining treatment that can be withheld or withdrawn near death. However, hemodialysis has unique features...
June 2018: Kidney Research and Clinical Practice
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