A Normative Justification for Distinguishing the Ethics of Clinical Research from the Ethics of Medical Care

2005 ◽  
Vol 33 (3) ◽  
pp. 566-574 ◽  
Author(s):  
Paul Litton ◽  
Franklin G. Miller
Keyword(s):  
Medical Care ◽  
Standard Treatment ◽  
Clinical Equipoise ◽  
Moral Obligations ◽  
Best Interest ◽  
Care Givers ◽  
Ethical Acceptability ◽  
Strong Disagreement ◽  
Normative Justification ◽  
Optimal Medical Care

In the research ethics literature, there is strong disagreement about the ethical acceptability of placebo-controlled trials, particularly when a tested therapy aims to alleviate a condition for which standard treatment exists. Recently, this disagreement has given rise to debate over the moral appropriateness of the principle of clinical equipoise for medical research. Underlying these debates are two fundamentally different visions of the moral obligations that investigators owe their subjects.Some commentators and ethics documents claim that physicians, whether acting as care givers or researchers, have the same duty of beneficence towards their patients and subjects: namely, that they must provide optimal medical care. In discussing placebo surgery in research on refractory Parkinson's disease, Peter Clark succinctly states this view: “The researcher has an ethical responsibility to act in the best interest of subjects.”

scholarly journals A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer's disease and related dementias in southwestern Uganda

2021 ◽  
pp. 1-14
Author(s):  
Catherine Abaasa ◽  
Celestino Obua ◽  
Edith K. Wakida ◽  
Godfrey Zari Rukundo
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Medical Care ◽  
Family Members ◽  
Medical Care System ◽  
Psychosocial Services ◽  
Care Givers ◽  
Care Giving ◽  
Southwestern Uganda ◽  
Care System

Abstract Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilised and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community.

Principles of Treatment of Disabled Infants

PEDIATRICS ◽  
1984 ◽  
Vol 73 (4) ◽  
pp. 559-560 ◽  
Author(s):  
Keyword(s):  
Decision Making ◽  
Medical Care ◽  
Professional Education ◽  
Medical Condition ◽  
Disabled Persons ◽  
Professional Organizations ◽  
Care Givers ◽  
Individual Care ◽  
The Government ◽  
Education And Employment

Discrimination of any type against any individual with a disability/disabilities, regardless of the nature or severity of the disability, is morally and legally indefensible. Throughout their lives, all disabled individuals have the same rights as other citizens, including access to such major societal activities as health care, education, and employment. These rights for all disabled persons must be recognized at birth. NEED FOR INFORMATION There is a need for professional education and dissemination of updated information which will improve decision-making about disabled individuals, especially newborns. To this end, it is imperative to educate all persons involved in the decision-making process. Parents should be given information on available resources to assist in the care of their disabled infant. Society should be informed about the value and worth of disabled persons. Professional organizations, advocacy groups, the government, and individual care givers should educate and inform the general public on the care, need, value, and worth of disabled infants. MEDICAL CARE When medical care is clearly beneficial, it should always be provided. When appropriate medical care is not available, arrangements should be made to transfer the infant to an appropriate medical facility. Consideration such as anticipated or actual limited potential of an individual and present or future lack of available community resources are irrelevant and must not determine the decisions concerning medical care. The individual's medical condition should be the sole focus of the decision. These are very strict standards. It is ethically and legally justified to withhold medical or surgical procedures which are clearly futile and will only prolong the act of dying.

scholarly journals Gender, cardiology, and optimal medical care.

Circulation ◽  
1986 ◽  
Vol 74 (5) ◽  
pp. 917-919 ◽  
Author(s):  
P S Douglas
Keyword(s):  
Medical Care ◽  
Optimal Medical Care

scholarly journals ASSUMPTIONS OF MAXIMAL INDIVIDUALISM IN THE TIME OF THE COVID-19 PANDEMIC: ETHICAL ASPECTS

2020 ◽  
Vol 4 (3) ◽  
pp. 79-88 ◽  
Author(s):  
EWA BAUM ◽  
AGNIESZKA ŻOK
Keyword(s):  
Human Rights ◽  
Medical Care ◽  
Ethical Aspects ◽  
To Come ◽  
Optimal Medical Care ◽  
The Way

Maximal individualism, which is currently a prevalent trend in the way many patients think, places high hopes in the achievements of biomedicine and assumes that everyone should always receive optimal medical care. Such an approach is in line with many normative and legal acts operating worldwide, including the Declaration of Human Rights. However, its feasibility and effectiveness in the time of the COVID-19 pandemic raises numerous ethical, social and economic dilemmas. The culture of prosperity and excess, characteristic of contemporary Western societies, makes it even more challenging to come to terms with this situation.

scholarly journals A partial defense of clinical equipoise

2019 ◽  
Vol 15 (2) ◽  
pp. 1-17
Author(s):  
Scott D Gelfand
Keyword(s):  
Clinical Trials ◽  
Randomized Clinical Trials ◽  
Clinical Equipoise ◽  
Best Interest ◽  
Fourth Section ◽  
Insight Into ◽  
Shed Light

In this essay, I suggest that a slightly modified version of Freedman’s formulation of the clinical equipoise requirement is justified. I begin this essay with a brief discussion of the equipoise requirement. In the second and third sections, I discuss several objections to the clinical equipoise requirement as well as two attempts to justify the equipoise requirement. In the fourth section, in order to gain some insight into what it means to say that a physician has an obligation to act in the best interest of her patient, I examine a similar obligation, namely, a parent’s obligation to act in her child’s best interest. I claim that there are several uncontroversial exceptions to this obligation, and these exceptions arise when a parent occupies a role more complex than the role of parent simpliciter. In the fifth section, I explore whether the exceptions to a parent’s obligation to act in her child’s best interest may shed light on some exceptions to a physician–researcher’s obligation to act in the best interest of her patient. These exceptions, I suggest, arise when a physician occupies a role more complex than physician simpliciter, and they ground a permission to conduct randomized clinical trials, even if doing so is not in the best interest of a physician–researcher’s patients. I furthermore claim that these exceptions provide justification for a modified formulation of the clinical equipoise requirement.

Dilemma of Trust: Relationship Between Medical Care Givers and Parents of Fatally Ill Children

PEDIATRICS ◽  
1974 ◽  
Vol 54 (2) ◽  
pp. 169-175
Author(s):  
J. Kirkpatrick ◽  
I. Hoffman ◽  
E. H. Futterman
Keyword(s):  
Decision Making ◽  
Medical Care ◽  
Childhood Leukemia ◽  
Psychosocial Adaptation ◽  
The Other ◽  
Major Aspect ◽  
Empirical Base ◽  
Care Givers ◽  
Decision Making Processes ◽  
The One

A major aspect of the course of parental psychosocial adaptation to childhood leukemia is described, focusing specifically upon the course of the parents' relationship with the physician and other care givers. At each stage of illness, situational components which are conducive to trust in the physician are identified along with others that are conducive to mistrust and doubt. Parents are seen as struggling with the dilemma of maintaining trust on the one hand and dealing with skeptical attitudes and angry reactions on the other. With interview data serving as the empirical base, variations in the balance between trust and mistrust are described in relation to stages in the course of the illness. An optimal role for parents in the care of the child is discussed, with the recommendation that parents be included in a meaningful way in decision-making processes.

Who Receives Optimal Medical Care?

1973 ◽  
Vol 14 (2) ◽  
pp. 176 ◽  
Author(s):  
Michael H. Miller
Keyword(s):  
Medical Care ◽  
Optimal Medical Care

scholarly journals Reasonable Parental and Medical Obligations in Pediatric Extraordinary Therapy

2019 ◽  
Vol 86 (2-3) ◽  
pp. 198-206 ◽  
Author(s):  
Michal Pruski ◽  
Nathan K. Gamble
Keyword(s):  
Medical Care ◽  
The United States ◽  
Parental Authority ◽  
Medical Team ◽  
Best Interest ◽  
Technological Support ◽  
Medical Opinion ◽  
Course Of Action ◽  
Appropriate Therapy ◽  
Medical Teams

The English cases of Charlie Gard and Alfie Evans involved a conflict between the desires of their parents to preserve their children’s lives and judgments of their medical teams in pursuit of clinically appropriate therapy. The treatment the children required was clearly extraordinary, including a wide array of advanced life-sustaining technological support. The cases exemplify a clash of worldviews rooted in different philosophies of life and medical care. The article highlights the differing perspectives on parental authority in medical care in England, Canada, and the United States. Furthermore, it proposes a solution that accommodates for both reasonable parental desires and professional medical opinion. This is achieved by looking at concepts of extraordinary therapy, best interest, reasonable parenthood and medical objections. Summary: In cases where a child’s treatment involves extraordinary therapy, there is often a conflict of opinion between the medical team and the parents with regard to the best course of action. The assumption should be that responsible, caring parents make reasonable and acceptable decisions for the good of their children. Rather than focusing on making a hypothetical best interest judgment, courts should in the first instance side with the parents. Only when parents act unreasonably or malevolently should their wishes be overridden. This should not affect the medics' right to conscientiously object towards carrying out procedures that they deem to be medically unnecessary or harmful.

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