Legal obligation of physicians to disclose information to patients.

Obtaining a patient''s consent is a routine daily process for physicians, although many are unaware of the scope of this legal obligation. In 1980 the Supreme Court of Canada changed the law relating to informed consent; promotion of patient autonomy shifted the focus from a standard of professional disclosure to one of a "reasonable patient." Physicians have a legal obligation to disclose to patients specific information, the scope of which is determined by a court on the basis of a reasonable patient''s expectation and the circumstances of the case. This gives rise to many controversies in the practice of clinical medicine. It is difficult for physicians to know which treatment risks require disclosure, since this is decided by a court in a retrospective analysis of the evidence. Will the court recognize exceptions to the duty of disclosing information? If several health care professionals are involved in a patient''s care who has the duty to disclose information? Can this duty be delegated? This paper provides physicians with guidelines that are consistent with the promotion of patient autonomy and comply with the doctrine of informed consent. In addition, it suggests ways of improving awareness of the doctrine and procedures to ease its application.     

RESPECTING AUTONOMY WITHOUT DISCLOSING INFORMATION

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient's or research participant's autonomy. In this article I set out to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose.     

When families cannot "let go": ethical decision-making at the bedside.

Shared decision-making at the bedside is now a regular feature of medical practice. When disagreements arise between a patient and family members caregivers sometimes find themselves caught in a complex tangle of human relationships that strains monochrome ethical thinking. The patient''s expressed wishes are often compromised for the sake of the family''s needs. Conversely, a unilateral appeal for patient autonomy may prove insensitive to the hurt and the needs of the family. We describe a relatively unsuccessful attempt by a patient''s caregivers to buy time to maximize the interests of the patient and her family and discuss the way in which the family dynamics militated against the rather obvious solution of promoting the patient''s right to refuse treatment. The purpose of this article is not to evoke sympathy for health care professionals in dealing with such conflicts but rather to heighten awareness of the issues at stake and to stimulate thinking about ways and means to bring about a more favourable outcome than the one described here.     

Autonomy is a Right,Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of ‘autonomy’ as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles – those of autonomy, integrity and authority – to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other – to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient‐centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.     

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study

ObjectiveTo clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes.DesignQualitative, ethnographic study in two phases.Setting10 wards in two nursing homes in the Netherlands.Participants35 patients with dementia, eight doctors, 43 nurses, and 32 families.ResultsThe clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients'' quality of life by their care providers were considered more important than living wills and policy agreements.ConclusionsDoctors'' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient''s medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.

What is already known on this topic

Debate has focused on whether it is beneficial to withhold the artificial administration of fluids and food from patients with advanced dementia

What this study adds

The course of dementia, the patient''s quality of life, and the patient''s current medical condition influence doctors'' decision making more than advanced planning of careDoctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family     

The ethics of learning from patients

Is it ethical for medicine to use patients as learning tools for medical students if these patients have not been given a chance to provide truly informed consent? Dr. Caroline Shooner raises this question in the following article, which claimed second prize in CMAJ''s 1996 Logie Medical Ethics Essay Contest. She considers the case of a patient whose trust was shaken when a medical student performed a chest-tube insertion. Shooner concludes that psychologic harm could have been avoided had the patient''s right to informed consent been respected. She also argues that few patients will turn down a chance to help students learn if the request is made properly and openly.     

Should consent be required for organ procurement?

Must we obtain a patient's consent before posthumously removing her organs? According to the consent requirement, in order to permissibly remove organs from a deceased person, it is necessary that her prior consent be obtained. If the consent requirement is true, then this seems to rule out policies that do not seek and obtain a patient's prior consent to organ donation, while at the same time vindicating policies that do seek and obtain patient consent. In this paper, however, I argue that once we recognize the difference between consent, on the one hand, and wishing or desiring, on the other, we will see that obtaining consent before organ removal is neither necessary nor sufficient to respect patient autonomy in organ procurement.     

Informed Consent in California: Latent Liability Without `Negligence'

Informed consent is a legal obligation due from a physician to his patient, an obligation which may not be met by the physician''s skillful treatment of his patient. It may only be met by the treating physician obtaining from his patient knowing authorization for carrying out the intended medical procedure. The physician is required to disclose whatever would be material to his patient''s decision, including the nature and purpose of the procedure, and the risks and alternatives. The disclosures should be made by the physician to his patient, and not through use of consent forms which are not particular to individual patients. To minimize any subsequent claim by the patient that there was a lack of adequate disclosures, the physician should record in the patient''s chart the circumstances of the patient''s consent, and should not rely on the patient''s unreliable ability to recall those circumstances.     

The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An ‘ethic of care’ interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.     

Family refusal of emergency medical treatment in China: An investigation from legal,empirical and ethical perspectives

This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non-Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low-income and middle-income countries. In this paper, we investigate family refusal in medical emergencies through a combination of legal, empirical and ethical approaches, which is highly relevant to the ongoing discussion about the place of informed consent in non-Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision-making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life-sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion.     

Bioethics for clinicians: 2. Disclosure.

In the context of patient consent, "disclosure" refers to the provision of relevant information by the clinician and its comprehension by the patient. Both elements are necessary for valid consent. Disclosure should inform the patient adequately about the treatment and its expected effects, relevant alternative options and their benefits and risks, and the consequences of declining or delaying treatment. The clinician''s goal is to disclose information that a reasonable person in the patient''s position would need in order to make an informed decision. Therefore, clinicians may need to consider how the proposed treatment (and other options) might affect the patient''s employment, finances, family life and other personal concerns. Clinicians may also need to be sensitive to cultural and religious beliefs that can affect disclosure.     

Familial Creutzfeldt-Jakob Disease: Case report and role of genetic counseling in post mortem testing

Here we present a case of an asymptomatic 53-year-old woman who sought genetic testing for Familial Creutzfeldt-Jakob Disease (fCJD) after learning that her mother had fCJD. The patient's mother had a sudden onset of memory problems and rapidly deteriorating mental faculties in her late 70s, which led to difficulties ambulating, progressive non-fluent aphasia, dysphagia and death within ～1 y of symptom onset. The cause of death was reported as “rapid onset dementia.” The patient's family, unhappy with the vague diagnosis, researched prion disorders online and aggressively pursued causation and submitted frozen brain tissue from the mother to the National Prion Disease Surveillance Center, where testing revealed a previously described 5-octapeptide repeat insertion (5-OPRI) in the prion protein gene (PRNP) that is known to cause fCJD. The family had additional questions about the implications of this result and thus independently sought out genetic counseling.

?While rare, fCJD is likely underdiagnosed due to clinical heterogeneity, rapid onset, early non-specific symptomatology, and overlap in the differential diagnosis of Alzheimer disease and Lewy body dementias. When fCJD is identified, a multidisciplinary approach to return of results that includes the affected patient's provider, genetics professionals, and mental health professionals is key to the care of the family. We present an example case which discusses the psychosocial issues encountered and the role of genetic counseling in presymptomatic testing for incurable neurodegenerative conditions. Ordering physicians should be aware of the basic issues surrounding presymptomatic genetic testing and identify local genetic counseling resources for their patients.     

What Is So Special About a Family Physician?

Around a core of common, acute and chronic, recurrent health problems, a family physician must marshall the traditional episodic management for both inpatient and outpatient illness. He must also be especially adept at recently emerging routines of prevention and early detection. He provides individual and familial psychologic support and counselling, for both its therapeutic and preventive values. In addition, he must relate the individual care of his patient and the patient''s family to the community as a whole. In doing this he will use not only his own skills but those of lay health volunteers, trained allied health care professionals and skilled subspecialists in the limited medical disciplines.The proper preparation of family physicians for this complicated role has far-reaching implications for change in both medical education and medical practice.     

An ethics of enchantment: forming affect and information in experimental paediatric medicine

Science and medicine have been cast as disenchanted arenas of modernity, even as scholars have illustrated the many enchantments of everyday life. Taking these conversations into the context of experimental paediatric medicine, I explore the dis/enchantments produced through the research ethics systems that govern interactions between medical practitioners and patients’ families. Research ethics enact forms of disenchantment, aiming to produce the informed patient-subject who can knowingly submit to the unknowns of experimental medicine. However, by following one young patient's emotive disruption of the consent process, I suggest that we instead consider an ethics of enchantment: one that recognizes the affective logics of patienthood alongside the informatic. Elaborating how ethical practice is both institutionally structured and interpersonally improvised, I develop key conversations from the anthropology of ethics, and highlight the interplay of enchantment and disenchantment that constitutes modern medical subjects.     

Kindliness is next to godliness.

Withdrawing life support is always difficult. When patients and health professionals are from different ethnic backgrounds, value systems that form the basis for such decisions may conflict. Many cultural groups do not place the same emphasis on patient autonomy and self-determination that Western society does and find the idea of terminating life support offensive. Although physicians should never assume patients will respond in a particular way because of their ethnic background, issues of life support should be discussed in a culturally sensitive way. African-American, Chinese, Jewish, Iranian, Filipino, Mexican-American, and Korean patients were surveyed about their views on life support. The findings reported here, although not meant to be definitive, should add to health professionals'' understanding about diverse beliefs around life-and-death issues. By becoming aware of this diversity of beliefs, health professionals can avoid the damage to the physician-patient relationship caused by conflicting value systems.     

Identification of patient's requirements in quality management system in health care institutions

AimTo present the solutions implemented in health care institution in the context of identification of patient's requirements, and evaluation of the level of patients’ satisfaction in accordance with the requirements of ISO norm 9001:2008 based on the experience of GPCC.BackgroundThe fundamental mechanisms behind the free market, such as competition, start applying also to the public health sector. Health service providers are gradually realising that patients are actual clients of health care institutions, with physicians, nurses, supporting personnel, registration officers and other staff responding to patients demand for medical and auxiliary services (e.g. exam registration, provision of information).Material and methodsPN-EN ISO 9001:2009 “Quality Management Systems. Requirements”, relevant literature and documentation of quality management system from the GPCC.The review of relevant literature and legal requirements; interpretation of provisions in relation to the functioning of health care institutions.ResultsModel of identification of patient's requirements and satisfaction in accordance with the requirements of ISO 9001:2008 has been elaborated and implemented in the GPCC.ConclusionThe identification of patient's requirements is much more complicated than evaluating the same parameters in manufacturing companies. In the context of medical services one should be aware of the subjectivity of patient's feelings, the psycho-social status and the general state of health during his or her treatment. Therefore, the identification of patient's requirements and satisfaction must be carefully thought out, implemented and regularly improved.     

A CMA position. Acquired immunodeficiency syndrome.

The following general principles serve as guidelines for various bodies, health care professionals and the general public. Specific aspects of infection with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) that relate to physicians'' ethical responsibilities as well as society''s moral obligations are discussed. Such matters include the need for education, research and treatment resources; the patient''s right to investigation and treatment and to refusal of either; the need to obtain the patient''s informed consent; the right to privacy and confidentiality; the importance of infection control; and the right to financial compensation in the case of occupational exposure to HIV.     

Use of hospital beds: a cohort study of admissions to a provincial teaching hospital.

An instrument was developed to study the use of hospital beds and discharge arrangements of a cohort of 847 admissions to the John Radcliffe Hospital, Oxford, for a three week period during February-March 1986. For only 38% of bed days were patients considered to have medical, nursing, or life support reasons for requiring a provincial teaching hospital bed. The requirements for a bed in the hospital decreased with the patient''s age and length of stay in hospital. For only a tenth of patients was the general practitioner concerned in discussions with hospital staff about the patient''s discharge and less than one third of patients had been given more than 24 hours'' notice of discharge. Several features might increase the proportion of bed days that are occupied by patients with positive reasons for being in hospital. Among these are an increased frequency of ward rounds by consultants, or delegating discharge decisions by consultants to other staff; providing diagnostic related protocols for planning the length of stay in hospital; planned discharges; and providing liaison nurses to help with communication with primary care staff.     

When doctors deny drugs: Sexism and contraception access in the medical field

Politicians, employers, courts, and health insurance companies are often discussed as problematically preventing access to birth control. However, doctors have more direct control over women's health and quietly have been much more effective at preventing patients' access to contraception. Obstetrician/Gynecologists routinely deny their patients access to contraception ostensibly in the name of health by withholding birth control until patients undergo yearly pap smears. I argue that those in the medical field are motivated by similarly sexist concerns as those in other major institutions in the United States, but that they are often overlooked in discussions of biomedical ethics. After providing background, I argue that using birth control as a bargaining chip to control patients is morally impermissible, is paternalistic, and is contrary to consent. I next argue that sexism explains, though does not justify, this practice. I discuss the medical harms of routine pap smears and withholding birth control. These claims make medical malpractice likely. Withholding birth control to coerce individuals seeking medical care is medical malpractice, paternalistic, violates autonomy, and is contrary to consent.