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https://www.readbyqxmd.com/read/29450782/-is-the-refusal-of-invasive-or-noninvasive-ventilation-in-a-child-with-spinal-muscular-atrophy-ethically-justified
#1
Martina Radner, Annette Henry
We report about an infant who was diagnosed with spinal muscular atrophy type 1 (Werdnig-Hoffmann) at the age of 7 weeks. In a detailed discussion with the physicians the parents decided against mechanical ventilation in the event of either acute or chronical respiratory failure. During care at home all palliative actions were taken to optimize the quality of life for the child. The boy died at the age of 7 months at home. Whether continuous mechanical ventilation in a child with spinal muscular atrophy type 1 should be the individual decision of the parents or whether it should never be offered by the physicians is discussed controversially in the present medical literature...
February 15, 2018: Wiener Medizinische Wochenschrift
https://www.readbyqxmd.com/read/29440127/ethics-and-patient-and-public-involvement-with-children-and-young-people
#2
Sarah Jane Mitchell, Anne-Marie Slowther, Jane Coad, Shazaan Akhtar, Elizabeth Hyde, Dena Khan, Jeremy Dale
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care...
February 9, 2018: Archives of Disease in Childhood. Education and Practice Edition
https://www.readbyqxmd.com/read/29436435/an-overview-of-the-spiritual-importances-of-end-of-life-care-among-the-five-major-faiths-of-the-united-kingdom
#3
Mohsin Choudry, Aishah Latif, Katharine G Warburton
For many who pertain to particular theological paradigms, their faith cannot be compartmentalised, but is mobilised to inform all aspects of their being, most notably their ethical and moral persuasions. As clinicians, the concept that there are good and bad deaths is already known; understanding the origin and depth of non-physical suffering, and aiming to alleviate it is not possible without learning the individual experiences and beliefs that go with it. Spiritual care forms a fundamental consideration in the endeavor to address the holistic experience of those patients receiving palliative care...
February 2018: Clinical Medicine: Journal of the Royal College of Physicians of London
https://www.readbyqxmd.com/read/29435712/antimicrobial-therapy-in-palliative-care-an-overview
#4
REVIEW
Filipa Macedo, Catarina Nunes, Katia Ladeira, Filipa Pinho, Nadine Saraiva, Nuno Bonito, Luísa Pinto, Francisco Gonçalves
In the advanced stages of illness, patients often face challenging decisions regarding their treatment and overall medical care. Terminal ill patients are commonly affected by infections. However, in palliative care, the use of antimicrobials can be an ethical dilemma. Deciding whether to treat, withhold, or withdraw the antimicrobial treatment for an infection can be difficult. Antimicrobial administration can lead to adverse outcomes but the two main benefits, longer survival and symptom relief, are the main reasons why physicians prescribe antimicrobial when treating terminally ill patients...
February 12, 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/29432353/practices-in-human-dignity-in-palliative-care-a-qualitative-study
#5
Esra Akin Korhan, Çağatay Üstün, Derya Uzelli Yilmaz
Respecting and valuing an individual's existential dignity forms the basis of nursing and medical practice and of nursing care. The objective of the study was to determine the approach to human dignity that nurses and physicians have while providing palliative care. This qualitative study was performed using a phenomenological research design. In-depth semistructured interviews were conducted in 9 nurses and 5 physicians with human dignity approach in palliative care. Following the qualitative Colaizzi method of analyzing the data, the statements made by the nurses and physicians during the interviews were grouped under 8 categories...
March 2018: Holistic Nursing Practice
https://www.readbyqxmd.com/read/29398351/assessing-the-decision-making-capacity-of-terminally-ill-patients-with-cancer
#6
Elissa Kolva, Barry Rosenfeld, Rebecca Saracino
OBJECTIVE: Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients...
December 27, 2017: American Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/29397085/erratum-to-%C3%A2-%C3%A2-ethical-considerations-and-palliative-care-in-patients-with-amyotrophic-lateral-sclerosis-a-review%C3%A2-%C3%A2-rev-neurol-173-5-2017-300-307
#7
V Danel-Brunaud, L Touzet, L Chevalier, C Moreau, D Devos, S Vandoolaeghe, L Defebvre
No abstract text is available yet for this article.
January 31, 2018: Revue Neurologique
https://www.readbyqxmd.com/read/29382541/palliative-sedation-for-existential-suffering-a-systematic-review-of-argument-based-ethics-literature
#8
REVIEW
Paulo Rodrigues, Jasper Crokaert, Chris Gastmans
CONTEXT: While unanimity exists on using palliative sedation (PS) for controlling refractory physical suffering in end-of-life situations, using it for controlling refractory existential suffering (PS-ES) is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice. OBJECTIVES: To systematically identify, describe, analyze, and discuss ethical arguments and concepts underpinning the argument-based bioethics literature on palliative sedation for refractory existential suffering...
January 27, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29375078/nurturing-futility-in-the-nicu-the-dutch-perspective
#9
A A Eduard Verhagen
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opportunity to examine how end-of-life decisions are made in Dutch neonatal intensive care units and how medical futility is defined. The Dutch equivalent of medical futility in the context of NICU care has grown and developed rather independently, within the typical legal, ethical, and cultural framework of Dutch society...
2018: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/29358429/the-journey-through-care-study-protocol-for-a-longitudinal-qualitative-interview-study-to-investigate-the-healthcare-experiences-and-preferences-of-children-and-young-people-with-life-limiting-and-life-threatening-conditions-and-their-families-in-the-west-midlands
#10
Sarah Mitchell, Anne-Marie Slowther, Jane Coad, Jeremy Dale
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive...
January 21, 2018: BMJ Open
https://www.readbyqxmd.com/read/29350699/medical-cannabis-the-oncology-nurse-s-role-in-patient-education-about-the-effects-of-marijuana-on-cancer-palliation
#11
Carey S Clark
BACKGROUND: Cannabis, also known as marijuana, is legal either medicinally or recreationally in 29 states and the District of Columbia, with a majority of the U.S. adult population now living in states where cannabis is legal for medicinal use. As an advocate for patient autonomy and informed choice, the oncology nurse has an ethical responsibility to educate patients about and support their use of cannabis for palliation. . OBJECTIVES: This article aims to discuss the human endocannabinoid system as a basis for better understanding the palliative and curative nature of cannabis as a medicine, as well as review cannabis delivery methods and the emerging role of the oncology nurse in this realm...
February 1, 2018: Clinical Journal of Oncology Nursing
https://www.readbyqxmd.com/read/29331209/ethical-and-end-of-life-considerations-for-neonates-requiring-ecmo-support
#12
REVIEW
Roxanne Kirsch, David Munson
ECMO has proven to be a life-saving intervention for a variety of disease entities with a high rate of survival in the neonatal population. However, ECMO requires clinical teams to engage in many ethical considerations. Even with ongoing improvements in technology and expertise, some patients will not survive a course of ECMO. An unsuccessful course of ECMO can be difficult to accept and cause a great deal of angst. These questions can result in real conflict both within the care team, and between the care team and the family...
January 10, 2018: Seminars in Perinatology
https://www.readbyqxmd.com/read/29305137/diagnosis-and-management-of-spinal-muscular-atrophy-part-2-pulmonary-and-acute-care-medications-supplements-and-immunizations-other-organ-systems-and-ethics
#13
Richard S Finkel, Eugenio Mercuri, Oscar H Meyer, Anita K Simonds, Mary K Schroth, Robert J Graham, Janbernd Kirschner, Susan T Iannaccone, Thomas O Crawford, Simon Woods, Francesco Muntoni, Brunhilde Wirth, Jacqueline Montes, Marion Main, Elena S Mazzone, Michael Vitale, Brian Snyder, Susana Quijano-Roy, Enrico Bertini, Rebecca Hurst Davis, Ying Qian, Thomas Sejersen
This is the second half of a two-part document updating the standard of care recommendations for spinal muscular atrophy published in 2007. This part includes updated recommendations on pulmonary management and acute care issues, and topics that have emerged in the last few years such as other organ involvement in the severe forms of spinal muscular atrophy and the role of medications. Ethical issues and the choice of palliative versus supportive care are also addressed. These recommendations are becoming increasingly relevant given recent clinical trials and the prospect that commercially available therapies will likely change the survival and natural history of this disease...
November 23, 2017: Neuromuscular Disorders: NMD
https://www.readbyqxmd.com/read/29302603/what-are-the-ethical-dimensions-in-the-profession-of-intensive-care-specialist
#14
REVIEW
Jean-Pierre Quenot, Fiona Ecarnot, Nicolas Meunier-Beillard, Auguste Dargent, Jean-Pierre Eraldi, François Bougerol, Audrey Large, Pascal Andreu, Jean-Philippe Rigaud
Two essential components of the profession of a medical doctor are the constant review of the patient's therapeutic project, and collaboration between healthcare professionals. The profession of intensive care unit (ICU) physician goes further in terms of responsibility, vis-à-vis the intensive treatments dispensed to the patients, and the physician's responsibilities towards the patient's family and the caregiving team, also bearing in mind that ICU care is costly in terms of human and financial resources...
December 2017: Annals of Translational Medicine
https://www.readbyqxmd.com/read/29301574/continuous-palliative-sedation-for-patients-with-advanced-cancer-at-a-tertiary-care-cancer-center
#15
Bernard Lobato Prado, Diogo Bugano Diniz Gomes, Pedro Luiz Serrano Usón Júnior, Patricia Taranto, Monique Sedlmaier França, Daniel Eiger, Rodrigo Coutinho Mariano, David Hui, Auro Del Giglio
BACKGROUND: Palliative sedation (PS) is an intervention to treat refractory symptoms and to relieve suffering at the end of life. Its prevalence and practice patterns vary widely worldwide. The aim of our study was to evaluate the frequency, clinical indications and outcomes of PS in advanced cancer patients admitted to our tertiary comprehensive cancer center. METHODS: We retrospectively studied the use of PS in advanced cancer patients who died between March 1st, 2012 and December 31st, 2014...
January 4, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29288878/distributive-justice-an-ethical-priority-in-global-palliative-care
#16
Rachel A Hadler, William E Rosa
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries (LMICs), where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase so do questions of fair and culturally appropriate distribution...
December 27, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29284761/refugees-in-conflict-creating-a-bridge-between-traditional-and-conventional-health-belief-models
#17
Eran Ben-Arye, Massimo Bonucci, Michel Daher, Rejin Kebudi, Bashar Saad, Thomas Breitkreuz, Maryam Rassouli, Elio Rossi, Nahla Gafer, Omar Nimri, Mohamed Hablas, Gunver Sophia Kienle, Noah Samuels, Michael Silbermann
The recent wave of migration from Middle Eastern countries to Europe presents significant challenges to the European health profession. These include the inevitable communication gap created by differences in health care beliefs between European oncologists, health care practitioners, and refugee patients. This article presents the conclusions of a workshop attended by a group of clinicians and researchers affiliated with the Middle East Cancer Consortium, as well as four European-based health-related organizations...
December 28, 2017: Oncologist
https://www.readbyqxmd.com/read/29258805/american-society-for-pain-management-nursing-and-hospice-and-palliative-nurses-association-position-statement-pain-management-at-the-end-of-life
#18
Patrick Coyne, Carol Mulvenon, Judith A Paice
Pain at the end of life continues to be of great concern as it may be unrecognized or untreated. Although nurses have an ethical obligation to reduce suffering, barriers remain regarding appropriate and adequate pain management at the end of life. This joint position statement from the American Society for Pain Management Nursing and Hospice and Palliative Nurses Association contains recommendations for nurses, prescribers, and institutions that would improve pain management for this vulnerable population.
December 16, 2017: Pain Management Nursing: Official Journal of the American Society of Pain Management Nurses
https://www.readbyqxmd.com/read/29251606/issues-in-access-to-end-of-life-care-in-low-resource-areas
#19
Yogesh Jain, Gajanan Phutke
Even though 1% of people require palliative and end-of-life care in low-resource situations, it remains an uncharted arena. Yet it is as important as curative care to alleviate suffering. Palliative care is not only a need in cancer and HIV disease; but is needed in a diverse group of illnesses ranging from tuberculosis, renal failures, paraplegia to chronic lung diseases. In a lower resource setting, the gaps in palliation may be the need for more technology and interventions or more healthcare professionals...
October 25, 2017: Indian Journal of Medical Ethics
https://www.readbyqxmd.com/read/29248924/is-there-more-to-zika-complex-cardiac-disease-in-a-case-of-congenital-zika-syndrome
#20
Asimenia Angelidou, Zoe Michael, Arda Hotz, Kevin Friedman, Sitaram Emani, Kerri LaRovere, Helen Christou
The epidemic of Zika virus (ZIKV) has resulted in a surge of newborns with microcephaly and brain abnormalities. In this report, we describe the first case, to our knowledge, of congenital Zika syndrome with concomitant critical congenital heart disease. The mother had a confirmed ZIKV infection in the first trimester of pregnancy. Fetal ultrasonography at 31 weeks of gestation revealed cerebral cortical calcifications and hypoplastic left heart syndrome. The severity of brain involvement was assessed by postnatal magnetic resonance imaging and echocardiogram, and palliative surgery was performed...
December 16, 2017: Neonatology
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