Impact of medical assistance in dying (MAiD) on family caregivers

2019 ◽  
pp. bmjspcare-2018-001686
Author(s):  
Rachel Goldberg ◽  
Rinat Nissim ◽  
Ekaterina An ◽  
Sarah Hales
Keyword(s):  
Family Caregivers ◽  
Terminal Illness ◽  
Well Being ◽  
Moral Dilemmas ◽  
Future Research ◽  
Anticipatory Grief ◽  
Medical Assistance ◽  
Loved One ◽  
Medical Assistance In Dying ◽  
The Impact

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one’s quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.

scholarly journals P009: Medical assistance in dying – a survey of Canadian emergency physicians

CJEM ◽  
2019 ◽  
Vol 21 (S1) ◽  
pp. S66
Author(s):  
F. Bakewell
Keyword(s):  
Emergency Medicine ◽  
Terminal Illness ◽  
Free Form ◽  
Medical Attention ◽  
Emergency Physicians ◽  
Medical Assistance ◽  
Electronic Survey ◽  
Medical Assistance In Dying ◽  
Self Harm ◽  
The Impact

Introduction: There have been 3714 medically assisted deaths recorded in Canada so far, with more than half of those deaths occurring outside the hospital – whether this has had any impact on emergency medicine has not yet been documented. This survey sought to find out Canadian emergency physicians’ (EPs) attitudes and experiences with medical assistance in dying (MAID). Methods: An electronic survey was distributed to CAEP members using a modified Dillman technique. The primary outcome was defined as the proportion of EPs in favour of MAID. Secondary outcomes included experience with suicide in the setting of terminal illness, their experience and opinion on referring patients for MAID from the ED, their experience with complications of MAID, and their response to hypothetical cases of complications from MAID. Nominal variables were analyzed and reported as percentages for each relevant answer. Answers submitted as free-form text were coded into themes by the author and reported based on these themes. Results: There were 303 completed surveys. EPs were largely in support of MAID (80.5%), and would be willing to refer patients for assessment from the ED (83.2%), however fewer (58.3%) knew how to do so. 37.1% of EPs had been asked for a referral for MAID assessment, but only 12.5% had made a referral. While only 1% of EPs reported having seen patients present with complications from MAID (failed IVs in the community), 5.0% had seen patients present with suicide or self-harm attempts after being told they were ineligible for MAID by another provider. Conclusion: This is the first study to examine the impact of MAID on emergency medicine in Canada, and it demonstrates that patients are both requesting referrals through the ED and, in rare cases, requiring medical attention for complications. This has implications for both increasing awareness of MAID referral processes for EPs, as well as for the prevention and treatment of complications of MAID in the community.

scholarly journals Horticulture-based Interventions to Enhance Health and Wellbeing of People Living With Dementia in the Community

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 647-647
Author(s):  
Theresa Scott ◽  
Ying-Ling Jao ◽  
Kristen Tulloch ◽  
Yates Eloise ◽  
Nancy Pachana
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Behavioral Symptoms ◽  
Future Research ◽  
Intervention Design ◽  
Community Settings ◽  
Residential Settings ◽  
Health And Wellbeing ◽  
The Impact

Abstract The majority of people living with dementia in the early and middle stages are cared for at home by family caregivers. Participation in meaningful activities is important for good quality of life. Recreation based on horticulture is beneficial for people living with dementia in residential settings, yet evidence within community settings is less clear. The aim of this research was to examine the existing evidence for the impact of using contact with nature, gardens and plants to enhance well-being of people living with dementia in the community. Our secondary aim was to explore the outcome domains and instruments that were employed in the existing research studies, to inform future research efforts and guide clinical practice. A systematic search was conducted covering several databases and gray literature. Original studies that examined group or individual horticulture-based activities or interventions were included. Of 2127 articles identified through searching, 10 were selected for full review. The findings reveal that horticulture-based intervention showed positive impacts on food intake, social interaction, and well-being in older adults with dementia. Some evidence shows that horticulture-based activities may alleviate stressful symptoms associated with living with dementia. Future research may further evaluate the effect of the interventions on cognitive function, physical function, and behavioral symptoms in a more rigorous intervention design.

scholarly journals Aspects of Grit Among Dementia Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 8-8
Author(s):  
Jyoti Savla ◽  
Karen Roberto ◽  
Jennifer Margrett
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Future Research ◽  
Spiritual Support ◽  
Dementia Caregivers ◽  
Dementia Caregiver ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

Anticipatory Grief, Proactive Coping, Social Support, and Growth: Exploring Positive Experiences of Preparing for Loss

2018 ◽  
Vol 81 (1) ◽  
pp. 107-129 ◽  
Author(s):  
Kylie B. Rogalla
Keyword(s):  
Social Support ◽  
Posttraumatic Growth ◽  
Mental Health Professionals ◽  
Personal Growth ◽  
Terminal Illness ◽  
Significant Degree ◽  
Proactive Coping ◽  
Future Research ◽  
Anticipatory Grief ◽  
Loved One

All mental health professionals will inevitably serve clients who face the expected death of a loved one. Prominent theories on the grieving process tend to begin after a death or other loss has occurred. Many individuals experience anticipatory grief prior to the physical death. Participants in this study consisted of 120 adults who were anticipating the death of a loved one due to terminal illness. The purpose of this investigation was to assess the relationship between the positive disposition of proactive coping and two forms of growth. Both personal and posttraumatic growth were present to a significant degree, and proactive coping illustrated unique predictive power in personal growth. Social support was a significant mediator of proactive coping and growth and was determined to be an outcome of the assertive nature of this disposition. Implications for helping professionals who serve anticipatory grievers as well as directions for future research are discussed.

scholarly journals 407 - The Baycrest Quick-Response Caregiver Tool: The Role for a New Tool for Caregivers of Persons with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 123-123
Author(s):  
Ken Schwartz ◽  
Robert Madan ◽  
Anna Berall ◽  
Marsha Natadira ◽  
Anna Santiago
Keyword(s):  
Family Caregivers ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Well Being ◽  
Moderate Degree ◽  
Quick Response ◽  
Care Providers ◽  
High Level ◽  
Person With Dementia ◽  
The Impact

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

scholarly journals QOLP-26. USE OF MEDICAL ASSISTANCE IN DYING (“DEATH WITH DIGNITY”) IN WASHINGTON STATE PATIENTS WITH BRAIN TUMORS.

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii180-ii180
Author(s):  
Jerome Graber ◽  
Kaite Sofie ◽  
Lynne Taylor
Keyword(s):  
Brain Tumors ◽  
Terminal Illness ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
High Grade Glioma ◽  
Washington State ◽  
Medical Assistance ◽  
Death With Dignity ◽  
Medical Assistance In Dying ◽  
Diagnosis Of Cancer

Abstract Since 2009, Washington State has had a “Death with Dignity” (DWD) process whereby people with a terminal illness may legally obtain a prescription for medications that will end their life. Patients initiate a voluntary request from two physicians certifying they have a prognosis < 6 months, are aware of other palliative care options, and have capacity without the comorbidity of a psychiatric diagnosis. Since 2015, over 200 people annually have used the DWD process in Washington. Other papers have described the characteristics of people using DWD with a diagnosis of cancer or amyotrophic lateral sclerosis (ALS) but none have specifically looked at patients with brain tumors (BT) who used DWD. We describe 20 people with BT who accessed DWD since 2015 at our center. Median age at the time of death was 51 (range 38-79) and 75% were men. Glioblastoma was the diagnosis in 10 (50%), anaplastic glioma in 8 (40%), grade II astrocytoma in 1, and a presumed high-grade glioma by imaging in 1. Median Karnofsky Performance Status (KPS) was 90 at diagnosis (range 50-100) and 70 at DWD request (range 40-90). Standard radiation (RT) and chemotherapy was used by 17 (85%) prior to DWD request, while 3 patients (15%, ages 70-79, KPS 50-90) requested DWD immediately after diagnosis and did not undergo further treatment. Pain was present in 4 patients (20%), 2 using opioids (10%). Six patients (30%) continued tumor treatments after approval for DWD. Median OS was 22 months (range 2-285) and 24 months excluding patients who declined treatment (range 8-285). Most glioma patients in our cohort requested DWD after undergoing chemoradiation, pain was uncommon and rarely severe, and survival from diagnosis was comparable to standard therapy. As access to medical assistance in dying continues, further research is needed on its utilization for people with brain tumors.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Community intervention strategies to reduce the impact of financial strain and promote financial well-being: a comprehensive rapid review

2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Community Intervention ◽  
Well Being ◽  
Small Sample ◽  
Financial Strain ◽  
Rapid Review ◽  
Research Centre ◽  
Future Research ◽  
The Impact

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.

Cognitive Impairment and Length of Stay in Acute Care Hospitals: A Scoping Review of the Literature

2021 ◽  
pp. 1-19
Author(s):  
Jonathan Plante ◽  
Karine Latulippe ◽  
Edeltraut Kröger ◽  
Dominique Giroux ◽  
Martine Marcotte ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Length Of Stay ◽  
Acute Care ◽  
Scoping Review ◽  
Research Question ◽  
Positive Association ◽  
Well Being ◽  
Future Research ◽  
Care Hospital ◽  
The Impact

Abstract Older persons experiencing a longer length of stay (LOS) or delayed discharge (DD) may see a decline in their health and well-being, generating significant costs. This review aimed to identify evidence on the impact of cognitive impairment (CI) on acute care hospital LOS/DD. A scoping review of studies examining the association between CI and LOS/DD was performed. We searched six databases; two reviewers independently screened references until November 2019. A narrative synthesis was used to answer the research question; 58 studies were included of which 33 found a positive association between CI and LOS or DD, 8 studies had mixed results, 3 found an inverse relationship, and 14 showed an indirect link between CI-related syndromes and LOS/DD. Thus, cognitive impairment seemed to be frequently associated with increased LOS/DD. Future research should consider CI together with other risks for LOS/DD and also focus on explaining the association between the two.

scholarly journals New Frontiers in Caregiving Research: Biopsychosocial Perspectives and Interventions

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 615-615
Author(s):  
Jyoti Savla ◽  
Karen Roberto ◽  
Mamta Sapra
Keyword(s):  
Family Caregivers ◽  
Memory Loss ◽  
Well Being ◽  
Psychoeducational Intervention ◽  
Loved One ◽  
Daily Diary Study ◽  
Physiological Processes ◽  
And Coping ◽  
With Memory ◽  
Health And Well Being

Abstract Although families embrace the opportunity to care for a loved one, caregiving is stressful and takes a toll on the caregiver’s health and well-being. Earlier studies of stress and coping among family caregivers focused on psychological outcomes and emotional well-being. In the last decade, stress researchers have broadened their focus to include biomarkers and health outcomes. Data from two studies of caregivers of persons with memory loss will be used to discuss two new frontiers of caregiving research. First, a daily-diary study will be used to identify the mechanism by which stress disrupts the physiological processes and proliferates into serious psychopathology and pre-clinical and clinical health conditions. Second, a mindfulness-based psychoeducational intervention study will be utilized to identify malleable factors that can be harnessed to lower stress and improve the well-being of family caregivers. Next steps for caregiving research in the context of demographic and technological trends will be discussed.

Sign in / Sign up

Export Citation Format

Share Document