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Palliative care, ethics

Sumaiya Adam, Melantha Coetzee, Engela Magdalena Honey
Pena-Shokeir syndrome (PSS) type 1, also known as fetal akinesia deformation sequence, is a rare genetic syndrome that almost always results in intrauterine or early neonatal death. It is characterized by markedly decreased fetal movements, intrauterine growth restriction, joint contractures, short umbilical cord, and features of pulmonary hypoplasia. Antenatal diagnosis can be difficult. Ultrasound features are varied and may overlap with those of Trisomy 18. The poor prognosis of PSS is due to pulmonary hypoplasia, which is an important feature that distinguishes PSS from arthrogryposis multiplex congenital without pulmonary hypoplasia, which has a better prognosis...
2018: Application of Clinical Genetics
Ayako Matsuda, Yosuke Yamada, Noriko Ishizuka, Eisuke Matsushima, Kunihiko Kobayashi, Takayoshi Ohkubo, Kazue Yamaoka
Background: Previous studies suggest the use of patient-reported outcome measures in routine clinical practice has important benefits for patients with cancer, particularly as feedback regarding patients’ quality of life (QOL) improves doctor-patient communication and clinical decision making. This study aimed to examine the effect of using the Care Notebook as a routine self-monitoring QOL intervention in clinical practice for patients with cancer receiving palliative care. The results are expected to clarify the practical use of the Care Notebook in this population...
November 28, 2018: Asian Pacific Journal of Cancer Prevention: APJCP
Berklee Robins, Adam Booser, John D Lantos
When a child needs surgery, both the surgeon and the anesthesiologist must obtain informed consent from the parents. In theory, each specialist obtains permission for their respective portion of the procedure, with the anesthesiologist only obtaining informed consent for the administration of anesthesia and management in the operating room and recovery room. However, he or she may occasionally realize that the parents have misunderstandings about what the surgery and perioperative course entail. In such cases, he or she must decide whether their role is only to discuss the issues related to anesthesia care or whether he or she should also clarify the range of expected outcomes and the postoperative course after surgery...
November 27, 2018: Pediatrics
Anna Lengyel, Anna Kosik, Éva Pinti, Csaba Lódi, Kálmán Tory, György Fekete, Irén Haltrich
Whole or partial trisomy of the short arm of chromosome 9 (9p) is considered to be one of the more frequent chromosome abnormalities compatible with life. The duplication may affect various organs, however the most common symptoms are certain specific facial dysmorphisms and abnormalities of the fingers, toes and nails. A one month old boy presented with failure to thrive, jaundice, ventricular septal defect (VSD) and dysmorphic face. He displayed symptoms of heart failure. The cardiologic examination revealed a significant VSD, hypoplasia of the aortic arch, pulmonary hypertension, decompensated circulatory failure and moderate left ventricle dysfunction...
November 2018: Orvosi Hetilap
Lori Seller, Marie-Ève Bouthillier, Veronique Fraser
BACKGROUND: Medical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues. METHODS: A retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests...
November 22, 2018: Journal of Medical Ethics
Deborah M Price, Linda K Strodtman, Marcos Montagnini, Heather M Smith, Bidisha Ghosh
BACKGROUND: The Institute of Medicine identifies that quality palliative/end-of-life (EOL) care should be provided to patients with serious, life-limiting illnesses and their families by competently prepared health professionals. PURPOSE: This study assessed perceived concerns of health professionals pertaining to the delivery of palliative/EOL care in the hospital setting. The specific aim was to determine thematic concerns in the delivery of palliative/EOL care which emerged from respondents' impressions of a memorable palliative/EOL patient experience...
November 21, 2018: American Journal of Hospice & Palliative Care
Freda DeKeyser Ganz, Batel Sapir
BACKGROUND: Significant barriers can block the provision of palliative care at the end of life in the intensive care unit (ICU). However, the relationship between perceptions of ICU quality palliative care and barriers to palliative care at the end of life is not well documented. AIMS AND OBJECTIVES: To describe ICU nurses' perceptions of quality palliative end-of-life care, barrier intensity and frequency to palliative care and their association with one another...
November 13, 2018: Nursing in Critical Care
Antonia P Francis, Michelle Chang, Cara D Dolin, Judith Chervenak, Elyce Cardonick
Hepatobiliary malignancies during pregnancy are extremely rare and portend a poor prognosis. There are only seven published cases of cholangiocarcinoma in an obstetrical patient, all are cases of primary cholangiocarcinoma (1-7). Herein, we describe the first case of recurrent cholangiocarcinoma during pregnancy. The patient did not receive chemotherapy during pregnancy and required prolonged hospitalizations for nutritional and intensive medical support. She delivered preterm, at 30 2/7 weeks gestation, after developing pre-eclampsia with severe features...
October 2018: American Journal of Perinatology Reports
Ercan Avci
One of the major purposes of palliative sedation is to reduce demand for euthanasia. The present paper analyzes a grievous case which demonstrates the killing of a 23-year-old son by his father due to the son's unbearable pain resulting from metastatic colorectal cancer. The article aimed to elaborate the case to figure out whether palliative sedation can be an alternative to euthanasia in a Muslim country. Nevertheless, the analysis of these two end-of-life issues revealed that the limitation of palliative sedation to an expected lifespan of less than 2 weeks as well as the Islamic view on the importance of protecting consciousness preclude reaching a conclusion that palliative sedation can be an alternative to euthanasia in this particular case...
October 2018: Indian Journal of Palliative Care
Sangeeta C Ahluwalia, Christine Chen, Laura Raaen, Aneesa Motala, Anne M Walling, Margaret Chamberlin, Claire O'Hanlon, Jody Larkin, Karl Lorenz, Olamigoke Akinniranye, Susanne Hempel
CONTEXT: Palliative care continues to be a rapidly growing field aimed at improving quality of life for patients and their caregivers. OBJECTIVES: The purpose of this review was to provide a synthesis of the evidence in palliative care to inform the fourth edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care. METHODS: Ten key review questions addressing eight content domains guided a systematic review focused on palliative care interventions...
October 26, 2018: Journal of Pain and Symptom Management
María Teresa García-Baquero Merino
Our medicalised modern cultures render reason and mystery mutually exclusive, define death by disease as failure, and dying as disgraceful. Providers and policymakers alike marginalize aging and dying individuals, formulating largely ineffective strategies without palliative care and pain relief budgets. The aim of palliative care is to support the person with incurable illness to live their remaining life as well and as meaningfully as possible and to support them as they eventually die from their illness and reaching the natural end of their lives It acknowledges that each life is morally significant, restoring patients' and families' quality of life where possible, and attending meticulously to the dying period as necessary (Saunders, 1965)...
2018: Frontiers in Pharmacology
Thomas David Riisfeldt
Opioid and sedative use are common 'active' practices in the provision of mainstream palliative care services, and are typically distinguished from euthanasia on the basis that they do not shorten survival time. Even supposing that they did, it is often argued that they are justified and distinguished from euthanasia via appeal to Aquinas' Doctrine of Double Effect. In this essay, I will appraise the empirical evidence regarding opioid/sedative use and survival time, and argue for a position of agnosticism...
October 23, 2018: Journal of Medical Ethics
Silvia Librada Flores, Emilio Herrera Molina, Fátima Díaz Díez, María José Redondo Moralo, Cristina Castillo Rodríguez, Kathleen McLoughlin, Julian Abel, Tamen Jadad Garcia, Miguel Ángel Lucas Díaz, Inmaculada Trabado Lara, María Dolores Guerra-Martín, María Nabal
BACKGROUND: End-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life. OBJECTIVE: The main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life...
October 12, 2018: JMIR Research Protocols
Antonio Noguera, Ramón Robledano, Eduardo Garralda
PURPOSE OF REVIEW: The aim of this review is to understand how palliative care teaching (PCT) as a patient-centered learning model, influences medical undergraduate students' professional development. RECENT FINDINGS: To study PCT medical undergraduate students' learning experiences, we have employed the medical teaching concept, 'hidden curriculum,' as a way of describing attitudes and behavior conveyed implicitly by palliative care educators. Fifteen studies were selected: ten of those studies used a qualitative approach; two are theoretical explanations of the topic explored, one guideline, one review and just one quantitative study, made up the review...
December 2018: Current Opinion in Supportive and Palliative Care
Thomas Frühwald
Nutritional problems at the end of life are of multifactorial origin, they require an interdisciplinary and multiprofessional approach. A basic precondition in deciding a nutritional therapeutic intervention is a valid medical indication. Fundamental ethical principles have to be respected.Another relevant question is if the nutritional therapeutic intervention will serve a meaningful, attainable goal in accordance with the patient's individual preferences and whether the expected benefit outweighs the potential risks...
October 2018: Deutsche Medizinische Wochenschrift
Maria Kolind Brask-Thomsen, Bodil Abild Jespersen, Mogens Grønvold, Per Sjøgren, Mette Asbjoern Neergaard
INTRODUCTION: Denmark has been ranked low regarding the extent of teaching in palliative care (PC) at medical schools although the Danish Health Authority recommends that all doctors have basic knowledge of PC. The aim of this study was to investigate the contents of and time spent on teaching in PC at the four Danish medical schools and to compare results with recommendations from the European Association of Palliative Care (EAPC). METHODS: Data were collected by examining university curricula, course catalogues, etc...
October 2018: Danish Medical Journal
Julia Downing, Sue Boucher, Julia Ambler, Tracey Brand, Zodwa Sithole, Busi Nkosi, Michelle Meiring, Elizabeth Gwyther, Lorna Sithole, Barbara Steel, Alex Daniels
The International Children's Palliative Care Network (ICPCN) held its third international conference on children's palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference-inspiration, innovation and integration-brought together 250 participants from 41 countries and was held in conjunction with local partners-Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children's palliative care in KwaZulu-Natal (KZN) and nationally...
2018: Ecancermedicalscience
Carlos Centeno, Thomas Sitte, Liliana de Lima, Sami Alsirafy, Eduardo Bruera, Mary Callaway, Kathleen Foley, Emmanuel Luyirika, Daniela Mosoiu, Katherine Pettus, Christina Puchalski, M R Rajagopal, Julianna Yong, Eduardo Garralda, John Y Rhee, Nunziata Comoretto
BACKGROUND: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group"). DESIGN: Thirteen experts in PC advocacy participated in an online Delphi process...
October 2018: Journal of Palliative Medicine
R Voumard, E Rubli Truchard, L Benaroyo, G D Borasio, C Büla, R J Jox
In aging societies, the last phase of people's lives changes profoundly, challenging traditional care provision in geriatric medicine and palliative care. Both specialties have to collaborate closely and geriatric palliative care (GPC) should be conceptualized as an interdisciplinary field of care and research based on the synergies of the two and an ethics of care.Major challenges characterizing the emerging field of GPC concern (1) the development of methodologically creative and ethically sound research to promote evidence-based care and teaching; (2) the promotion of responsible care and treatment decision making in the face of multiple complicating factors related to decisional capacity, communication and behavioural problems, extended disease trajectories and complex social contexts; (3) the implementation of coordinated, continuous care despite the increasing fragmentation, sectorization and specialization in health care...
September 20, 2018: BMC Geriatrics
Laura Tincknell, Anne O'Callaghan, Joanna Manning, Phillipa Malpas
During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man's confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police. In this article the junior doctor, the palliative medicine specialist, a medical ethicist, and a lawyer consider the case from their various perspectives...
2018: Journal of Clinical Ethics
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