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Advance care planning, end of life

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https://www.readbyqxmd.com/read/28643812/-conscience-clause-in-end-of-life-care
#1
Ludovica De Panfilis, Daniela Cattaneo, Luisanna Cola, Maddalena Gasparini, Corinna Porteri, Daniela Tarquini, Alessandro Tiezzi, Simone Veronese, Silvia Zullo, Eugenio Pucci
The article proposes a critical reflection on issues that appeal to the conscience clause as part of end of life care can produce and what can guarantee freedom of conscience, self-determination of those involved and respect for the dignity of the sick person. After a philosophical and normative analysis, the article is organized on the basis of two important documents for discussion: a position paper of Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva (SIAARTI) signed by several scientific societies "Grandi insufficienze d'organo end stage: cure intensive o cure palliative?" and the Design of Law currently being debated "Norme in materia di consenso informato e di disposizioni anticipate di trattamento"...
May 2017: Recenti Progressi in Medicina
https://www.readbyqxmd.com/read/28631959/advance-care-planning-for-patients-with-amyotrophic-lateral-sclerosis
#2
Benjamin H Levi, Zachary Simmons, Courtney Hanna, Allyson Brothers, Erik Lehman, Elana Farace, Megan Bain, Renee Stewart, Michael J Green
PURPOSE: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. METHODS: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients...
March 5, 2017: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/28630131/-it-s-a-hard-conversation-to-have-healthcare-professionals-views-concerning-advance-care-discussions-with-young-people-affected-by-life-limiting-neuromuscular-diseases-an-interview-study
#3
Andy Hiscock, Stephen Barclay
OBJECTIVE: Life-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases...
June 19, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28627303/the-surprise-question-in-paediatric-palliative-care-a-prospective-cohort-study
#4
Kimberley Burke, Lucy Helen Coombes, Antoinette Menezes, Anna-Karenia Anderson
BACKGROUND: The question 'would you be surprised if this patient died in the next 12-months' is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children. AIM: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period. DESIGN: A prospective cohort study...
June 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28623155/care-toward-the-end-of-life-in-older-populations-and-its-implementation-facilitators-and-barriers-a-scoping-review
#5
REVIEW
Diane Erin Threapleton, Roger Y Chung, Samuel Y S Wong, Eliza L Y Wong, Nicole Kiang, Patsy Y K Chau, Jean Woo, Vincent C H Chung, Eng Kiong Yeoh
PURPOSE: To inform health system improvements for care of elderly populations approaching the end of life (EOL) by identifying important elements of care and implementation barriers and facilitators. DESIGN: A scoping review was carried out to identify key themes in EOL care. Articles were identified from MEDLINE, the Cochrane Library, organizational websites, and internet searches. Eligible publications included reviews, reports, and policy documents published between 2005 and 2016...
June 13, 2017: Journal of the American Medical Directors Association
https://www.readbyqxmd.com/read/28618896/managing-risk-during-care-transitions-when-approaching-end-of-life-a-qualitative-study-of-patients-and-health-care-professionals-decision-making
#6
Maureen A Coombs, Roses Parker, Kay de Vries
BACKGROUND: Increasing importance is being placed on the coordination of services at the end of life. AIM: To describe decision-making processes that influence transitions in care when approaching the end of life. DESIGN: Qualitative study using field observations and longitudinal semi-structured interviews. SETTING/PARTICIPANTS: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand...
July 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28609264/supporting-muslim-patients-during-advanced-illness
#7
REVIEW
Nathan A Boucher, Ejaz A Siddiqui, Harold G Koenig
Religion is an important part of many patients' cultural perspectives and value systems that influence them during advanced illness and toward the end of life when they directly face mortality. Worldwide violence perpetrated by people identifying as Muslim has been a growing fear for people living in the US and elsewhere. This fear has further increased by the tense rhetoric heard from the recent US presidential campaign and the new presidential administration. For many, this includes fear of all Muslims, the second-largest religious group in the world with 1...
2017: Permanente Journal
https://www.readbyqxmd.com/read/28596151/survey-on-advance-care-planning-of-italian-outpatients-on-chronic-haemodialysis
#8
Nicola Panocchia, Giuseppe Tonnara, Roberta Minacori, Dario Sacchini, Maurizio Bossola, Luigi Tazza, Giovanni Gambaro, Antonio Gioacchino Spagnolo
OBJECTIVES: The clinical practice guidelines published by the Renal Physicians Association (USA) recommend instituting advance care planning (ACP) for patients with end-stage renal disease. Studies on this issue are lacking in Italy. Our aim was to determine the attitudes of patients on ACP in our dialysis centre. METHODS: We performed a cross-sectional survey. We recruited patients on maintenance haemodialysis (HD) at Hemodialysis Center of Università Cattolica del Sacro Cuore, from 1 March 2014 to 31 March 2015...
June 8, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28593859/european-association-for-neuro-oncology-eano-guidelines-for-palliative-care-in-adults-with-glioma
#9
REVIEW
Andrea Pace, Linda Dirven, Johan A F Koekkoek, Heidrun Golla, Jane Fleming, Roberta Rudà, Christine Marosi, E Le Rhun, Robin Grant, Kathy Oliver, Ingela Oberg, Helen J Bulbeck, Alasdair G Rooney, Roger Henriksson, H Roeline W Pasman, Stefan Oberndorfer, Michael Weller, Martin J B Taphoorn
Patients with glioma present with complex palliative care needs throughout their disease trajectory. The life-limiting nature of gliomas and the presence of specific symptoms related to neurological deterioration necessitate an appropriate and early palliative care approach. The multidisciplinary palliative care task force of the European Association of Neuro-Oncology did a systematic review of the available scientific literature to formulate the best possible evidence-based recommendations for the palliative care of adult patients with glioma, with the aim to reduce symptom burden and improve the quality of life of patients and their caregivers, particularly in the end-of-life phase...
June 2017: Lancet Oncology
https://www.readbyqxmd.com/read/28562402/artificial-nutrition-and-hydration-in-people-with-late-stage-dementia
#10
Lenora Smith, Rita Ferguson
The progressive nature of dementia marks this disease as a terminal illness in the advanced stage, and palliative care rather than curative treatment is indicated. The use of feeding tubes to deliver artificial nutrition and hydration at end of life is often part of the plan of care for people with dementia. Current evidence, however, suggests that tube feeding in advanced dementia is not beneficial and the burdens of the procedure and the feedings themselves outweigh any benefits. Evidence also reveals that healthcare providers may lack evidence-based knowledge about artificial nutrition and hydration to adequately inform families and surrogate decision makers...
June 2017: Home Healthcare Now
https://www.readbyqxmd.com/read/28560783/end-of-life-care-planning-in-accountable-care-organizations-associations-with-organizational-characteristics-and-capabilities
#11
Sangeeta C Ahluwalia, Benjamin J Harris, Valerie A Lewis, Carrie H Colla
OBJECTIVE: To measure the extent to which accountable care organizations (ACOs) have adopted end-of-life (EOL) care planning processes and characterize those ACOs that have established processes related to EOL. DATA SOURCES: This study uses data from three waves (2012-2015) of the National Survey of ACOs. Respondents were 397 ACOs participating in Medicare, Medicaid, and commercial ACO contracts. STUDY DESIGN: This is a cross-sectional survey study using multivariate ordered logit regression models...
May 30, 2017: Health Services Research
https://www.readbyqxmd.com/read/28544078/emergency-medical-services-providers-perspective-of-end-of-life-decision-making-for-people-with-intellectual-disabilities
#12
Jacqueline McGinley, Deborah P Waldrop, Brian Clemency
BACKGROUND: Emergency medical services (EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes. METHODS: This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies...
May 24, 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28544056/exploring-the-knowledge-attitudes-and-needs-of-advance-care-planning-in-older-chinese-australians
#13
S S Yap, K Chen, K M Detering, S A Fraser
AIMS AND OBJECTIVES: The purpose of this study was to identify factors that influence the engagement of Chinese-Australians with advance care planning (ACP). BACKGROUND: Despite the benefits of ACP there is a low prevalence of ACP in the Chinese-Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death, however, other logistical factors may also be important. DESIGN: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in ACP...
May 23, 2017: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/28506127/living-into-death-a-case-for-an-iterative-fortified-and-cross-sector-approach-to-advance-care-planning
#14
Rebecca Llewellyn, Chrystal Jaye, Richard Egan, Wayne Cunningham, Jessica Young, Peter Radue
Advance care planning (ACP) has been framed as best practice for quality palliative care, yet a growing body of literature affirms the need for an early iterative ACP process to begin when people are young and healthy. A significant gap appears to exist in the literature regarding the utility of death conversations outside the end-of-life context. Could 'death conversations' early in life be an effective tool by which doctor and patient can co-construct a more healthful way of life, and realistic relationship with death? And what variables must be taken into account for these conversations to proceed successfully? This paper provides a narrative exploration of the value of death conversations in the clinical context in New Zealand...
May 16, 2017: Anthropology & Medicine
https://www.readbyqxmd.com/read/28504894/preventing-burdensome-transitions-of-nursing-home-residents-with-advanced-dementia-it-s-more-than-advance-directives
#15
Ruth Palan Lopez, Susan L Mitchell, Jane L Givens
BACKGROUND: Although a palliative approach to care is recommended for people with advanced dementia, many nursing home (NH) residents with dementia experience burdensome interventions such as hospital transfers at the end of life. OBJECTIVE: The goal of this study was to examine how decisions to transfer NH residents with advanced dementia are made, from the perspective of NH nurses and physicians. METHODS: A qualitative, descriptive method was used...
May 15, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28499512/the-organ-transplant-imperative
#16
REVIEW
Wil L Santivasi, Jacob J Strand, Paul S Mueller, Thomas J Beckman
More than 120,000 US patients were listed for solid organ transplants in 2016. Although data are scarce, we suspect that many of these patients will die while awaiting transplant and without engaging in goals-of-care discussions with their physicians. The challenges of addressing goals of care in patients with malignancy, end-stage renal disease, and heart failure have been studied. However, there is sparse literature on addressing goals of care throughout the dynamic process of transplant assessment and listing...
May 10, 2017: Mayo Clinic Proceedings
https://www.readbyqxmd.com/read/28488291/advance-care-planning-with-individuals-experiencing-homelessness-literature-review-and-recommendations-for-public-health-practice
#17
Sarah A Hubbell
Vulnerable populations in the United States experience disparities in access to advance care planning and may have significant unmet health care needs at the end of life, including unrelieved suffering. People who are homeless have increased morbidity and mortality risks, yet lack opportunities to communicate end-of-life preferences. This paper includes a narrative literature review of advance care planning interventions and qualitative investigations into end-of-life concerns among people experiencing homelessness...
May 10, 2017: Public Health Nursing
https://www.readbyqxmd.com/read/28486068/developing-implementing-and-sustaining-an-end-of-life-care-programme-in-residential-care-homes
#18
Julie Kinley, Louisa Stone, Anna Butt, Barbara Kenyon, Nuno Santos Lopes
BACKGROUND: In the UK 15.8% of people aged 85 years and over live in a care home or long-stay hospital setting. With the projection of an ageing population it is realistic to expect that the number of people both living and dying in all care homes will increase. This article describes the implementation of an end-of-life care programme to empower staff to meet their resident's end-of-life care needs. METHODS: To implement an end-of-life care programme, namely the 'Steps to Success' programme, in residential care homes...
April 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28485515/consensus-statement-of-the-international-summit-on-intellectual-disability-and-dementia-related-to-end-of-life-care-in-advanced-dementia
#19
Philip McCallion, Mary Hogan, Flavia H Santos, Mary McCarron, Kathryn Service, Sandy Stemp, Seth Keller, Juan Fortea, Kathleen Bishop, Karen Watchman, Matthew P Janicki
BACKGROUND: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. METHODS: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup...
May 9, 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28481607/engagement-in-steps-of-advance-health-care-planning-by-homeless-veterans
#20
Patricia M Dubbert, Kimberly K Garner, Shelly Lensing, J Glen White, Dennis H Sullivan
Communicating health care preferences in advance, so that wishes can be honored if the person becomes unable to participate in decision-making, is especially important for vulnerable populations such as homeless veterans. Hospitals are required to inform patients of their rights to document their preferences, but completion rates for advance directives are low. Conceptualizing advance health care planning as a series of health behavior steps emphasizing communication is recommended for improving engagement in advance health care planning...
May 2017: Psychological Services
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