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Decision making at the end of life

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https://www.readbyqxmd.com/read/29790870/genetic-disorders-and-mortality-in-infancy-and-early-childhood-delayed-diagnoses-and-missed-opportunities
#1
Monica H Wojcik, Talia S Schwartz, Inbar Yamin, Heather L Edward, Casie A Genetti, Meghan C Towne, Pankaj B Agrawal
PurposeInfants admitted to a level IV neonatal intensive care unit (NICU) who do not survive early childhood are a population that is probably enriched for rare genetic disease; we therefore characterized their genetic diagnostic evaluation.MethodsThis is a retrospective analysis of infants admitted to our NICU between 1 January 2011 and 31 December 2015 who were deceased at the time of records review, with age at death less than 5 years.ResultsA total of 2,670 infants were admitted; 170 later died. One hundred six of 170 (62%) had an evaluation for a genetic or metabolic disorder...
April 12, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
https://www.readbyqxmd.com/read/29776669/-the-role-of-end-of-life-palliative-sedation-medical-and-ethical-aspects-review
#2
REVIEW
Miriam S Menezes, Maria das Graças Mota da Cruz de Assis Figueiredo
BACKGROUND AND OBJECTIVE: Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the issue regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas...
May 15, 2018: Revista Brasileira de Anestesiologia
https://www.readbyqxmd.com/read/29774777/current-research-status-of-palliative-care-in-mainland-china
#3
Tao Wang, Alex Molassiotis, Betty Pui Man Chung, Jing-Yu Tan
OBJECTIVES: This study aimed to obtain an overview of the current research status of palliative care in Mainland China and identify research directions for future studies by characterizing palliative care studies conducted among patients with any life-limiting illness in Mainland China and published in a peer-reviewed journal before November 2016. METHODS: A review guide with 7 categories was initially developed based on existing international palliative care definitions and guidelines through content analysis...
January 1, 2018: Journal of Palliative Care
https://www.readbyqxmd.com/read/29767579/healthcare-use-costs-and-quality-of-life-in-patients-with-end-stage-kidney-disease-receiving-conservative-management-results-from-a-multi-centre-observational-study-packs
#4
Glenn Phair, Ashley Agus, Charles Normand, Kevin Brazil, Aine Burns, Paul Roderick, Alexander P Maxwell, Colin Thompson, Magdi Yaqoob, Helen Noble
BACKGROUND: Previous research has explored the cost of providing renal replacement therapies in patients with end-stage kidney disease and their quality of life. This is the first study to examine the healthcare costs of patients receiving conservative care without dialysis for end-stage kidney disease. This alternative to dialysis is an option for patients who prefer a supportive and palliative care approach. AIM: Descriptive cost and quality of life analyses alongside a UK-based multi-centre observational study in patients receiving conservative management for end-stage kidney disease...
May 1, 2018: Palliative Medicine
https://www.readbyqxmd.com/read/29763969/hormone-replacement-therapy-for-women-previously-treated-for-endometrial-cancer
#5
REVIEW
Katharine A Edey, Stuart Rundle, Martha Hickey
BACKGROUND: Endometrial cancer is the sixth most common cancer in women worldwide and most commonly occurs after the menopause (75%) (globocan.iarc.fr). About 319,000 new cases were diagnosed worldwide in 2012. Endometrial cancer is commonly considered as a potentially 'curable cancer,' as approximately 75% of cases are diagnosed before disease has spread outside the uterus (FIGO (International Federation of Gynecology and Obstetrics) stage I). The overall five-year survival for all stages is about 86%, and, if the cancer is confined to the uterus, the five-year survival rate may increase to 97%...
May 15, 2018: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/29755917/sharing-is-caring-minimizing-the-disruption-with-palliative-care
#6
EDITORIAL
Abd Moain Abu Dabrh, Robert P Shannon, Richard J Presutti
There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority...
March 13, 2018: Curēus
https://www.readbyqxmd.com/read/29752324/dances-with-denial-have-medical-oncology-outpatients-conveyed-their-end-of-life-wishes-and-do-they-want-to
#7
Amy Waller, Charles Douglas, Rob Sanson-Fisher, Nicholas Zdenkowski, Angela Pearce, Tiffany Evans, Justin Walsh
Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Methods: Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center...
May 2018: Journal of the National Comprehensive Cancer Network: JNCCN
https://www.readbyqxmd.com/read/29743764/definition-of-terms-used-in-limitation-of-treatment-and-providing-palliative-care-at-the-end-of-life-the-indian-council-of-medical-research-commission-report
#8
Naveen Salins, Roop Gursahani, Roli Mathur, Shivakumar Iyer, Stanley Macaden, Nagesh Simha, Raj Kumar Mani, M R Rajagopal
Background: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. Methodology: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research...
April 2018: Indian Journal of Critical Care Medicine
https://www.readbyqxmd.com/read/29742629/death-in-trauma-the-role-of-the-acnp-in-patient-advocacy-and-familial-support-in-end-of-life-care-decision-making
#9
Stephanie N Barndt
The trauma acute care nurse practitioner (ACNP) participates in the care of critically-ill patients by utilizing his or her advanced clinical skills at the bedside and through communication with the interdisciplinary team, the patient, and the patient's family. Although the incidence of morbidity is decreasing in trauma, death can occur shortly after arrival to hospital, or in the days after initial injury, leading to the need for the unexpected conversation of end-of-life wishes with a patient or the patient's family...
May 2018: Journal of Trauma Nursing: the Official Journal of the Society of Trauma Nurses
https://www.readbyqxmd.com/read/29742044/end-of-life-decision-making-in-palliative-care-and-recommendations-of-the-council-of-europe-qualitative-secondary-analysis-of-interviews-and-observation-field-notes
#10
Sandra Martins Pereira, Emília Fradique, Pablo Hernández-Marrero
BACKGROUND: End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. OBJECTIVE: To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs...
May 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29704618/themes-addressed-by-couples-with-advanced-cancer-during-a-communication-skills-training-intervention
#11
Laura S Porter, Laura Fish, Karen Steinhauser
CONTEXT: Couple-based communication interventions have beneficial effects for patients with cancer and their partners. However, few studies have targeted patients with advanced stages of disease and little is known about how best to assist couples in discussing issues related to life-limiting illness. OBJECTIVES: The purpose of the present study was to identify themes couples addressed during a couple communication skills intervention, and the frequency with which they discussed issues related to end-of-life...
April 25, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29694439/decision-making-process-and-factors-contributing-to-research-participation-among-general-practitioners-a-grounded-theory-study
#12
Seng Fah Tong, Chirk Jenn Ng, Verna Kar Mun Lee, Ping Yein Lee, Irmi Zarina Ismail, Ee Ming Khoo, Noor Azizah Tahir, Iliza Idris, Mastura Ismail, Adina Abdullah
INTRODUCTION: The participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research. METHODS: We used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs...
2018: PloS One
https://www.readbyqxmd.com/read/29689298/-suffering-in-palliative-sedation-conceptual-analysis-and-implications-for-decision-making-in-clinical-practice
#13
Claudia Bozzaro, Jan Schildmann
Palliative sedation is an increasingly used and, simultaneously, challenging practice at the end of life. Many controversies associated with this therapy are rooted in implicit differences regarding the understanding of "suffering" as prerequisite for palliative sedation. The aim of this paper is to inform the current debates by a conceptual analysis of two different philosophical accounts of suffering, (1) the subjective and holistic concept and (2) the objective and gradual concept and by a clinical-ethical analysis of the implications of each account for decisions about palliative sedation...
April 21, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29688843/cost-of-medical-care-of-patients-with-advanced-serious-illness-in-singapore-compass-prospective-cohort-study-protocol
#14
Irene Teo, Ratna Singh, Chetna Malhotra, Semra Ozdemir, Rebecca A Dent, Nesaretnam Barr Kumarakulasinghe, Wee Lee Yeo, Yin Bun Cheung, Rahul Malhotra, Ravindran Kanesvaran, Alethea Chung Pheng Yee, Noreen Chan, Huei Yaw Wu, Soh Mun Chin, Hum Yin Mei Allyn, Grace Meijuan Yang, Patricia Soek Hui Neo, Nivedita V Nadkarni, Richard Harding, Eric A Finkelstein
BACKGROUND: Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life...
April 23, 2018: BMC Cancer
https://www.readbyqxmd.com/read/29672149/access-to-aid-in-dying-in-the-united-states-shifting-the-debate-from-rights-to-justice
#15
Mara Buchbinder
Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients' rights of self-determination in end-of-life decision-making. Less attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID...
April 19, 2018: American Journal of Public Health
https://www.readbyqxmd.com/read/29667509/the-involvement-of-cancer-patients-in-the-four-stages-of-decision-making-preceding-continuous-sedation-until-death-a-qualitative-study
#16
Lenzo Robijn, Jane Seymour, Luc Deliens, Ida Korfage, Jayne Brown, Peter Pype, Agnes Van Der Heide, Kenneth Chambaere, Judith Rietjens
BACKGROUND: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. AIM: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. DESIGN: Qualitative case studies using interviews...
April 1, 2018: Palliative Medicine
https://www.readbyqxmd.com/read/29661749/a-website-supporting-sensitive-religious-and-cultural-advance-care-planning-acptalk-formative-and-summative-evaluation
#17
Amanda Pereira-Salgado, Patrick Mader, Clare O'Callaghan, Leanne Boyd
BACKGROUND: Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations...
April 16, 2018: JMIR Research Protocols
https://www.readbyqxmd.com/read/29661335/head-and-neck-cancer-in-the-elderly-frailty-shared-decisions-and-avoidance-of-low-value-care
#18
REVIEW
Leila J Mady, Marci L Nilsen, Jonas T Johnson
Head and neck cancer (HNC) is a disease of older adults. Recurrent and metastatic head and neck squamous cell carcinoma portends a poor prognosis, with median overall survival of less than 12 months. Within this vulnerable population, significant treatment-related toxicities and physical and psychosocial sequelae can be devastating to quality of life at the end of life. Shared decision making and early comprehensive palliative and support services are at the crux of the approach to older adults with HNC. In doing so, low-value care that fails to meet the goals of patients and their caregivers at the end-of-life may be avoided...
May 2018: Clinics in Geriatric Medicine
https://www.readbyqxmd.com/read/29655666/environmental-considerations-in-the-selection-of-isolation-gowns-a-life-cycle-assessment-of-reusable-and-disposable-alternatives
#19
Eric Vozzola, Michael Overcash, Evan Griffing
BACKGROUND: Isolation gowns serve a critical role in infection control by protecting healthcare workers, visitors, and patients from the transfer of microorganisms and body fluids. The decision of whether to use a reusable or disposable garment system is a selection process based on factors including sustainability, barrier effectiveness, cost, and comfort. Environmental sustainability is increasingly being used in the decision-making process. Life cycle assessment is the most comprehensive and widely used tool used to evaluate environmental performance...
April 11, 2018: American Journal of Infection Control
https://www.readbyqxmd.com/read/29649031/low-level-of-vegetative-state-after-traumatic-brain-injury-in-a-swiss-academic-hospital
#20
Federica Stretti, Stephanie Klinzing, Ulrike Ehlers, Peter Steiger, Reto Schuepbach, Tanja Krones, Giovanna Brandi
BACKGROUND: No standards exist regarding decision making for comatose patients, especially concerning life-saving treatments. The aim of this retrospective, single-center study was to analyze outcomes and the decision-making process at the end of life (EOL) in patients with traumatic brain injury (TBI) in a Swiss academic tertiary care hospital. METHODS: Consecutive admissions to the surgical intensive care unit (ICU) with stays of at least 48 hours between January 1, 2012 and June 30, 2015 in patients with moderate to severe TBI and with fatality within 6 months after trauma were included...
April 11, 2018: Anesthesia and Analgesia
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