End-of-life care in multiple sclerosis

2021 ◽  
Vol 17 (4) ◽  
pp. 170-170
Author(s):  
Megan Roberts
Keyword(s):  
Multiple Sclerosis ◽  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Resource Constraints ◽  
Life Care

Palliative care is an aspect of the support needed by those living with multiple sclerosis and their loved ones that is often overlooked, due to resource constraints and lack of awareness. Megan Roberts outlines the ways in which health professionals can support their patients at the end of life, signposting to helpful resources.

Palliative care for community patients diagnosed with dementia: a systematic review

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Good Practice ◽  
Community Setting ◽  
Life Care ◽  
Staff Support ◽  
The Uk

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.

scholarly journals Undergraduate palliative care education in the United Arab Emirates: a nationwide assessment of medical school deans

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Thana Harhara ◽  
Halah Ibrahim
Keyword(s):  
Palliative Care ◽  
Medical Students ◽  
Medical School ◽  
End Of Life ◽  
United Arab Emirates ◽  
Health Professionals ◽  
End Of Life Care ◽  
Successful Implementation ◽  
Life Care ◽  
High Quality

Abstract Background The provision of comprehensive, high quality palliative care (PC) is a global public health concern. In the United Arab Emirates (UAE), palliative medicine services are limited, and most patients in need of PC are treated in the acute hospital setting, where health professionals of all specialties provide treatment. Improving end-of-life care requires teaching medical students, residents, and other healthcare professionals about PC. The purpose of this study was to assess the current status of PC education in medical schools in the UAE, and to identify barriers to successful implementation of a PC and end-of-life curriculum. Methods The authors conducted semi-structured interviews with deans from all medical schools in the UAE. Data were analyzed using qualitative content analysis. Results All medical school deans in our study recognized the importance of inculcating palliative and end-of-life care into the undergraduate curriculum, but there was substantial variability in implementation, with opportunities for improvement. Barriers to the successful implementation of an undergraduate PC curriculum include (1) lack of student awareness and interest in PC, (2) inconsistent clinical exposure to PC, (3) lack of specialized PC faculty, (4) limited clinical facilities for PC training, (5) lack of a multidisciplinary approach to PC education, and (6) cultural barriers to PC education. Conclusions Understanding challenges to teaching PC in the undergraduate medical curriculum can help inform educational interventions to improve PC knowledge and skills for UAE medical students. Curricular and policy reform are necessary to educate a future generation of health professionals, who can provide high quality palliative care services to UAE patients and their families.

The experiences of health professionals, patients, and families with truth disclosure when breaking bad news in palliative care: A qualitative meta-synthesis

2021 ◽  
pp. 1-12
Author(s):  
Elizabeth M. Miller ◽  
Joanne E. Porter ◽  
Michael S. Barbagallo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Terminal Care ◽  
Bad News ◽  
Breaking Bad News ◽  
Life Care ◽  
Truth Disclosure ◽  
Breaking Bad

Abstract Objective Disclosing the truth when breaking bad news continues to be difficult for health professionals, yet it is essential for patients when making informed decisions about their treatment and end-of-life care. This literature review aimed to explore and examine how health professionals, patients, and families experience truth disclosure during the delivery of bad news in the inpatient/outpatient palliative care setting. Methods A systemized search for peer-reviewed, published papers between 2013 and 2020 was undertaken in September 2020 using the CINAHL, Medline, and PsycInfo databases. The keywords and MeSH terms (“truth disclosure”) AND (“palliative care or end-of-life care or terminal care or dying”) were used. The search was repeated using (“bad news”) AND (“palliative care or end-of-life care or terminal care or dying”) terms. A meta-synthesis was undertaken to synthesize the findings from the eight papers. Results Eight papers were included in the meta-synthesis and were represented by five Western countries. Following the synthesis process, two concepts were identified: “Enablers in breaking bad news” and “Truth avoidance/disclosure.” Several elements formed the concept of Enablers for breaking bad news, such as the therapeutic relationship, reading cues, acknowledgment, language/delivery, time/place, and qualities. A conceptual model was developed to illustrate the findings of the synthesis. Significance of results The conceptual model demonstrates a unique way to look at communication dynamics around truth disclosure and avoidance when breaking bad news. Informed decision-making requires an understanding of the whole truth, and therefore truth disclosure is an essential part of breaking bad news.

Canada’s Evolving Medicare: End-of-Life Care

2020 ◽  
pp. 082585972092416
Author(s):  
Nicole MacPherson ◽  
Terrence Montague ◽  
John Aylen ◽  
Lesli Martin ◽  
Amédé Gogovor ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Life Care ◽  
Assisted Death ◽  
The Public ◽  
Hospice And Palliative Care ◽  
Over Time

A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.

scholarly journals Más de dos décadas en cuidados paliativos en Costa Rica

2020 ◽  
pp. 99-104
Author(s):  
Javier A. Rojas Elizondo
Keyword(s):  
Public Health ◽  
Palliative Care ◽  
Costa Rica ◽  
End Of Life ◽  
Health Professionals ◽  
Clinical Guidelines ◽  
End Of Life Care ◽  
National Council ◽  
Life Care

This article presents a synthesis on the development of palliative care in Costa Rica, articulated through the National Council for Palliative Care, an institution linked to the Ministry of Public Health. We conclude that the coordination among different organisms that work on behalf of consensus in care is essential to establish norms, protocols, and clinical guidelines for health professionals in end-of-life care.

scholarly journals Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multivariate Logistic Regression ◽  
Comfort Care ◽  
Lower Odds ◽  
Medicare Data ◽  
Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

scholarly journals Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ishrat Islam ◽  
Annmarie Nelson ◽  
Mirella Longo ◽  
Anthony Byrne
Keyword(s):  
Social Media ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Public Attitudes ◽  
Death And Dying ◽  
Service Utilisation ◽  
Life Care ◽  
Manner Of Death ◽  
Attitudes Towards Death

Abstract Background Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. Methods An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. Results 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

scholarly journals Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital

2021 ◽  
pp. 026921632110020
Author(s):  
Kieran L Quinn ◽  
Amy T Hsu ◽  
Christopher Meaney ◽  
Danial Qureshi ◽  
Peter Tanuseputro ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Major Surgery ◽  
Life Care ◽  
Healthcare Use ◽  
National Cohort ◽  
Acute Healthcare ◽  
Invasive Intervention

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

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