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Advance care planning, end of life

Kathleen Oare Lindell, Mehdi Nouraie, Melinda J Klesen, Sara Klein, Kevin F Gibson, Daniel J Kass, Margaret Quinn Rosenzweig
Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses...
2018: BMJ Open Respiratory Research
Mary M Mitchell, Eric D Hansen, Tuo-Yen Tseng, Meng Shen, Cynda Rushton, Tom Smith, Nancy Hutton, Jennifer Wolfe, Lee Bone, Jeanne Keruly, Lawrence Wissow, Amy R Knowlton
CONTEXT & OBJECTIVE: Advance care planning (ACP) rates remain low, especially among people who are HIV positive, disadvantaged, and African American. While ACP can be a sensitive topic for clinicians and patients to discuss, health values clarification can be an important initial step. METHODS: Data were from the first 325 participants in the AFFIRM Care study, which enrolled adults living with HIV/AIDS in Baltimore, MD, who had histories of illicit drug use...
March 8, 2018: Journal of Pain and Symptom Management
Magnolia Cardona, Ebony T Lewis, Robin M Turner, Hatem Alkhouri, Stephen Asha, John Mackenzie, Margaret Perkins, Sam Suri, Anna Holdgate, Luis Winoto, Chan-Wei Chang, Blanca Gallego-Luxan, Sally McCarthy, Mette R Kristensen, Michael O'Sullivan, Helene Skjøt-Arkil, Anette A Ekmann, Hanne H Nygaard, Jonas J Jensen, Rune O Jensen, Jonas L Pedersen, Dorothy Breen, John A Petersen, Birgitte N Jensen, Christian Backer Mogensen, Ken Hillman, Mikkel Brabrand
BACKGROUND: Prognostic uncertainty inhibits clinicians from initiating timely end-of-life discussions and advance care planning. This study evaluates the efficacy of the CriSTAL (Criteria for Screening and Triaging to Appropriate aLternative care) checklist in emergency departments. METHODS: Prospective cohort study of patients aged ≥65 years with any diagnosis admitted via emergency departments in ten hospitals in Australia, Denmark and Ireland. Electronic and paper clinical records will be used to extract risk factors such as nursing home residency, physiological deterioration warranting a rapid response call, personal history of active chronic disease, history of hospitalisations or intensive care unit admission in the past year, evidence of proteinuria or ECG abnormalities, and evidence of frailty to be concurrently measured with Fried Score and Clinical Frailty Scale...
March 6, 2018: Archives of Gerontology and Geriatrics
Phillip M Pifer, Mark K Farrugia, Malcolm D Mattes
BACKGROUND: Early palliative/supportive care (PSC) consultation and advance care planning (ACP) improve outcomes for patients with incurable cancer. However, PSC is underutilized in the United States. OBJECTIVE: To examine philosophical differences among PSC, radiation oncology (RO), and medical oncology (MO) physicians in order to understand barriers to early PSC referral. DESIGN: An electronic survey collected views of a nationwide cohort of health-care professionals regarding ACP and end-of-life care...
January 1, 2018: American Journal of Hospice & Palliative Care
Laura P Gelfman, Marie Bakitas, Lynne Warner Stevenson, James N Kirkpatrick, Nathan E Goldstein
BACKGROUND: Heart failure (HF) is a chronic progressive illness associated with physical and psychological burdens, high morbidity, mortality, and healthcare utilization. Palliative care is interdisciplinary care that aims to relieve suffering and improve quality of life for persons with serious illness and their families. It is offered simultaneously with disease-oriented care, unlike hospice or end-of-life care. Despite the demonstrated benefits of palliative care in other populations, evidence for palliative care in the HF population is limited...
June 2017: Journal of Palliative Medicine
Benito Jesús Fontecha-Gómez, Jordi Amblàs-Novellas, Évora Betancor-Santana, Lourdes Rexach-Cano, Marina Isabel Ugarte, Araceli López-Pérez, Kenneth Planas, Nuria Gutiérrez Jiménez, Rosario Casas Floriano, Cristina García-Fortea, Gala Serrano Bermúdez, María Rotllàn-Terradellas, Daniel Fernández-Ponce
The identification of patients with advanced and complex chronic diseases, and the fragmentation of care towards the end of life, requires the drawing up a long-term therapeutic plan. This should take into account the values and preferences of the patients, as well as the vital and functional prognosis. Having an adjustment tool for determining the diagnostic and therapeutic effort is helpful in the continuity of care, as well as in decision-making in the transitions and dynamic changes of patients as they approach the end of life process...
February 20, 2018: Revista Española de Geriatría y Gerontología
Michael Hoerger, Joseph A Greer, Vicki A Jackson, Elyse R Park, William F Pirl, Areej El-Jawahri, Emily R Gallagher, Teresa Hagan, Juliet Jacobsen, Laura M Perry, Jennifer S Temel
Purpose We describe the key elements of early palliative care (PC) across the illness trajectory and examine whether visit content was associated with patient-reported outcomes and end-of-life care. Methods We performed a secondary analysis of patients with newly diagnosed advanced lung or noncolorectal GI cancer (N = 171) who were randomly assigned to receive early PC. Participants attended at least monthly visits with board-certified PC physicians and advanced practice nurses at Massachusetts General Hospital...
February 23, 2018: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
David B Bekelman, Rachel Johnson-Koenke, Daniel W Bowles, Stacy M Fischer
BACKGROUND: Patients with cancer could benefit from early primary (i.e., basic) palliative care. Scalable models of care delivery are needed. OBJECTIVE: Examine the feasibility of a stepped peer navigator and social work intervention developed to improve palliative care outcomes. DESIGN: Single-arm prospective clinical trial. The peer navigator educated patients to advocate for pain and symptom management with their healthcare providers, motivated patients to pursue advance care planning, and discussed the role of hospice...
February 20, 2018: Journal of Palliative Medicine
Corinna Porteri
BACKGROUND: The proposal of the new criteria for the diagnosis of Alzheimer's disease (AD) based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment (MCI) or predementia/prodromal- stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. MAIN BODY: Advance directives are largely seen as an effective tool for planning medical care in the event the subject becomes incompetent...
February 20, 2018: BMC Medical Ethics
Yi Lin Lee, Yee Yian Ong, Sze Ying Thong, Shin Yi Ng
Aim: Progress in medical care and technology has led to patients with more advanced illnesses being admitted to the Intensive Care Unit (ICU). The practice of approaching end-of-life (EOL) care decisions and limiting care is well documented in Western literature but unknown in Singapore. We performed a retrospective cohort study to describe the practice of EOL care in patients dying in a Singapore surgical ICU (SICU). The surgical critical care population was chosen as it is unique because surgeons are frequently involved in the EOL process...
January 2018: Indian Journal of Palliative Care
Soumya J Niranjan, Chao-Hui S Huang, J Nicholas Dionne-Odom, Karina I Halilova, Maria Pisu, Patricia Drentea, Elizabeth A Kvale, Kerri S Bevis, Thomas W Butler, Edward E Partridge, Gabrielle B Rocque
CONTEXT: Respecting Choices is an evidence-based model of facilitating advance care planning (ACP) conversations between health-care professionals and patients. However, the effectiveness of whether lay patient navigators can successfully initiate Respecting Choices ACP conversations is unknown. As part of a large demonstration project (Patient Care Connect [PCC]), a cohort of lay patient navigators underwent Respecting Choices training and were tasked to initiate ACP conversations with Medicare beneficiaries diagnosed with cancer...
January 1, 2018: Journal of Palliative Care
Vania F S Mayoral, Fernanda B Fukushima, Aniela M Rodrigues, Raissa P Carvalho, Larissa P Carvalho, Leandro A F V Pinheiro, Bertha F Polegato, Marcos F Minicucci, Rick Bassett, Alvin H Moss, Karl E Steinberg, Edison I O Vidal
BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) paradigm is considered one of the most important strategies to respect patients' values at the end of life in the United States. The cross-cultural adaptation of POLST entailed several methodological considerations, which may be informative for international researchers who may also consider bringing POLST to their countries as a means to promote care at the end of life that is consistent with patients' preferences...
February 12, 2018: Journal of Palliative Medicine
Karin Piil, Mary Jarden
PURPOSE: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement...
February 2, 2018: Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses
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
Benjamin Hudson, Victoria Hunt, Andrea Waylen, Catherine Anne McCune, Julia Verne, Karen Forbes
BACKGROUND: Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden towards the end of life. Despite this, patients rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs, and exploring attitudes of patients and carers towards palliative care, is lacking. AIM: To explore the needs of patients and carers with liver disease towards the end of life, evaluate how existing services meet need, and examine patient and carer attitudes towards palliative care...
January 1, 2018: Palliative Medicine
Marcus Sellars, Rachael L Morton, Josephine M Clayton, Allison Tong, Daveena Mawren, William Silvester, David Power, Ronald Ma, Karen M Detering
AIM: To examine the efficacy of advance care planning (ACP) to improve the likelihood that end-stage kidney disease (ESKD) patient's preferences will be known and adhered to at end-of-life. METHODS: A case-control study of a nurse-led ACP program in adults with ESKD from a major tertiary hospital. The primary outcome was the proportion of patients whose preferences were known (by substitute decision maker and/or clinicians) and adhered to by their treating doctors...
February 1, 2018: Nephrology
Michin Hong, Banghwa L Casado, Sang E Lee, Rachel Pruchno
Background and Objectives: Advance care planning (ACP) is crucial for quality end-of-life care for patients with Alzheimer's disease. However, limited evidence is available about ACP among ethnic minorities, particularly in the context of Alzheimer's disease. The purpose of this study was to examine intention to discuss ACP for a family member with Alzheimer's disease among Korean Americans. Guided by the theory of planned behavior and prior research, we examined the relationships between acculturation, attitudes, subjective norms, perceived control, and intention to discuss ACP for a family member with Alzheimer's disease...
January 29, 2018: Gerontologist
Imatullah Akyar, James N Dionne-Odom, Grace Meijuan Yang, Marie A Bakitas
The field of palliative care is growing in acceptance and sophistication globally. No longer considered just for patients at end-of-life, palliative care is now being incorporated early in the disease trajectory. Despite professional guidelines supporting early palliative care, there are few models that have been created that can be translated into practice cross-culturally. In the United States, the Educate, Nurture, Advise, Before, Life Ends (ENABLE) early palliative care telehealth model has demonstrated effectiveness in improving quality of life, mood, symptom relief, and survival for patients with cancer and is now being tested in patients with heart failure...
January 2018: Asia-Pacific Journal of Oncology Nursing
Joanne Hall, Sadie P Hutson, Frankie West
As part of a mixed methods study determining end-of-life and advanced care planning needs in southern Appalachia, a narrative analysis was done of stories told in interviews of 8 selected participants using transcript data. Narratives were fraught with contradiction and paradox. Tensions were evident about living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The primary finding was that stigma, from several sources, and shrinking circles of social support for people living with HIV/AIDS, all of whom were in treatment, combined to create a sense of solitariness...
January 1, 2018: American Journal of Hospice & Palliative Care
Kathryn Cappell, Vandana Sundaram, Annie Park, Parveen Shiraz, Ridhi Gupta, Patricia Jenkins, Vyjeyanthi S J Periyakoil, Lori Muffly
Background Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP amongst allogeneic HCT recipients, and the relationship between ACP and intensity of health care utilization in these patients. Methods We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died following HCT...
January 22, 2018: Biology of Blood and Marrow Transplantation
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