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Health Care Providers’ Experiences with Implementing Medical Aid-in-Dying in Vermont: a Qualitative Study
BackgroundThe evolving legal landscape for medical aid-in-dying (AID) in the USA raises clinical and public health challenges and concerns regarding how health care providers will accommodate AID while expanding access to high-quality end-of-life care.ObjectiveTo describe Vermont health care providers’ experiences practicing under the “Patient Choice and Control at End of Life” Act.DesignQualitative semi-structured interviews analyzed using grounded theory.ParticipantsThe larger study included 144 health care providers, terminally ill patients, caregivers, policy stakeholders, and other Vermont residents working in 10 out of Vermont’s 14 counties. This article reports on a subset of 37 providers who had clinical experience with the law.Main MeasuresThemes from interviews.Key ResultsPhysicians were roughly split between hospital and community-based practices. Most were women (68%) and the largest subgroup specialized in internal or family medicine (53%). Most of the nurses and social workers were women (89%) and most worked for hospice and home health agencies (61%). We identified five domains in which participants engaged with AID: (1) clinical communication and counseling; (2) the Act 39 protocol; (3) prescribing medication; (4) planning for death; and (5) professional education. How providers experienced these five domains of clinical practice depended on their practice setting and the supportive resources available.ConclusionHealth care providers’ participation in AID involves clinical tasks outside of responding to patients’ requests and writing prescriptions. Research to identify best practices should focus on all domains of clinical practice in order to best prepare providers.
Journal Article
Has the world lost its humanity?
This title offers an original and unique perspective of events during the darkest period of Iraq's modern history. The book is based on the author's personal and professional experience as director of the charity Medical Aid for Iraqi Children, MAIC. Through her fifteen years work at MAIC, May shares fascinating insight on the effects of UN sanctions on the daily life of Iraqis. She also explores issues rarely discussed before: the complex process of liaising with sanction departments in London and New York and she highlights the problems the charity encountered in the process. May describes emotionally her visits to children's hospitals in Iraq and the children's tragic suffering where even basic medical needs were mostly unavailable. It also narrates heart-warming stories of ordinary people from all walks of life, offering selfless sacrifices to provide support to the Iraqi children.
Book
AUTHOR(IZ)ING DEATH
In 2017, Oregon marked the twentieth anniversary of enacting the Death with Dignity Act, allowing terminally ill, mentally competent adult patients to end their life by ingesting a lethal medication prescribed by their physician. In U. S. public discourse, medical aid-in-dying is frequently equated with the terminology and morality of suicide, much to the frustration of those who use and administer the law. This article reflects on the stakes of maintaining a distinction between a medically assisted death and the most common cultural category for self-inflicted death—suicide. It uncovers the complicated dialectic between authorship and authorization that characterizes medical assistance in dying and attendant moralities of purposive death, speaking to broader disciplinary concerns in the cultural study of death and medicine. By stressing the primacy of debilitating, life-limiting illness in an aided death and by submitting such a death to the rationale and management of institutionalized medicine, advocates carve out a form of intentional death that occupies a category of its own. The diffusion of agency onto a patient’s fatal illness, medicine, and the state—both discursively and in practice—enhances the moral and social acceptability of an assisted death, which becomes an authorized form of dying that looks very different from the socially deviant act of suicide.
Journal Article
Terminal anorexia nervosa: three cases and proposed clinical characteristics
Background
Most individuals with eating disorders will either recover, settle into an unrecovered but self-defined acceptable quality of life, or continue to cycle from crisis to relative stability over time. However, a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful. No level of harm reduction proves achievable or adequately ameliorates their suffering. In this subgroup, many of those with anorexia nervosa will experience the medical consequences of malnutrition as their future cause of death. Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight. They recognize that death from anorexia nervosa, while perhaps not welcome, will be inevitable. Unfortunately, these patients and their carers often receive minimal support from eating disorders health professionals who are conflicted about terminal care, and who are hampered and limited by the paucity of literature on end-of-life care for those with anorexia nervosa.
Case presentation
Three case studies elucidate this condition. One patient was so passionate about this topic that she asked to be a posthumous co-author of this paper.
Conclusions
Consistent with literature on managing terminal illness, this article proposes clinical characteristics of patients who may be considered to have a terminal eating disorder: diagnosis of anorexia nervosa, older age (e.g. age over 30), previous participation in high quality care, and clear and consistent determination by a patient who possesses decision-making capacity that additional treatment would be futile, knowing their actions will result in death. By proposing the clinical characteristics of terminal anorexia nervosa, we hope to educate, inspire compassion, and help providers properly assess these patients and provide appropriate care. We hope that this proposal stimulates further expert consensus definitions and clinical guidelines for management of this population. In our view, these patients deserve the same attendant care and rights as all other patients with terminal illness, up to and including medical aid in dying in jurisdictions where such care is legal.
Journal Article
This Small Army of Women : Canadian Volunteer Nurses and the First World War
\"With her linen head scarf and white apron emblazoned with a red cross, the Voluntary Aid Detachment nurse, or VAD, has become a romantic emblem of the Great War. This book tells the story of the nearly two thousand women from Canada and Newfoundland who volunteered to \"do their bit\" overseas and at home. Well-educated and middle-class but largely untrained, VADs were excluded from Canadian military hospitals overseas (the realm of the professional nurse) but helped solve Britain's nursing deficit. Their struggle to secure a place at their brothers' bedsides reveals much about the tensions surrounding amateur and professional nurses and women's evolving role outside the home.\"-- Provided by publisher.
Book
Examining public stigma and expectations of grief following medical aid and dying in the US: A vignette-based experiment
Families bereaved following Medical Aid in Dying (MAID)-related death express concerns about public stigma. As access to MAID expands, research examining MAID is needed, including understanding stigma toward family members. This study examines if stigmatization exists toward bereaved individuals whose family member utilized MAID at differing ages and assess if expectations of grief differ between bereaved individuals whose family member utilized MAID compared to bereaved individuals whose family member died of an illness.
This study utilized a randomized, between-groups, vignette-based experiment to test the effects of cause of death (MAID vs. illness-related death) and age (28, 38, 70, and 80 years) of the deceased on indicators of public stigma. Participants (
= 428) were recruited from mTURK (
= 42.54;
= 16.50).
Analyses showed a statistically significant interaction between age and the mode of death (
(7, 400),
= 0.001, $\\eta _{\\rm p}^2$ = 0.06) and the main effect for age (
(5, 401),
= 0.004, $\\eta _{\\rm p}^2$ = 0.04) on expectations of grief, whereas emotional reactions and wanting social distance were not significant (
> 0.05). Participants expected more maladaptive grief among family members of 28- and 70-year-olds who died of illness compared to 28- or 38-year-olds who utilized MAID [28-year-old (
= 44.12,
= 12.03) or 70-year-old (
= 44.32,
= 10.29) illness-related death vs. 28-year-old (
= 39.3,
= 11.56;
= 0.01) or 38-year-old (
= 38.71,
= 11.56;
= 0.007) MAID-related death].
Findings suggest that direct stigma does not exist toward family members of individuals engaging in MAID. The American public may expect that family members of young individuals who utilize MAID are accepting of the death and expect them to experience fewer maladaptive grief symptoms. Future research should investigate differences in bereavement outcomes based on age of bereaved caregivers of individuals engaging in MAID.
Journal Article
Impact and Sustainability of Foreign Medical Aid: A Qualitative Study with Honduran Healthcare Providers
There is growing concern about the sustainability and long-term impact of short-term medical missions (STMMs)-an increasingly common form of foreign medical aid-given that brief engagements do little to address the underlying poverty and fragmented healthcare system that plagues many low- and middle-income countries (LMICs). In the absence of formal evaluations, unintended but serious consequences for patients and local communities may arise, including a lack of continuity of patient care, poor alignment with community needs, and cultural and language barriers.
We conducted semi-structured interviews with Honduran healthcare providers (n = 88) in 2015 to explore local providers' perceptions of the impact and sustainability of foreign medical aid on patient needs, community health, and the country's healthcare system.
Respondents represented a random sample of Honduran healthcare providers (physicians, dentists, nurses) who worked for either a government-run rural clinic or non-governmental organization (NGO) in Honduras.
Honduran healthcare providers largely framed foreign medical teams as being assets that help to advance community health through the provision of medical personnel and supplies. Nonetheless, most respondents identified strategies to improve implementation of STMMs and reduce negative impacts. Many respondents emphasized a need for culturally- and linguistically-tailored medical care and health education interventions. Participants also recommended strengthening local partnerships to mitigate the risk of dependence, including on-going training and support of community health workers to promote sustainable change.
Guidelines informed by local Honduran expertise are needed to increase accountability for more robust training of foreign physicians in the provision of context-appropriate care. These findings provide valuable local perspectives from Honduran healthcare providers to improve the development and implementation of STMMs, informing strategies that can complement and strengthen healthcare systems in LMICs.
Journal Article