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This chapter discusses the chronically ill patient's right to know about his or her condition. It describes the case of 46-year-old Abel Cohen, who was diagnosed with inoperable metastasized cancer and whose wife told all their neighbours about his illness while he was unaware of his own condition. The chapter explains that everyone is entitled to hear the truth at his or her own pace and that transference of one's fears to the patient can cloud one's judgment and vision.

The aim of this chapter is to explore the broader meaning and application of rights talk in connection with health from the 1970s to the early 1990s. It begins by considering the various ways in which the language of rights was used in the context of health. The chapter then moves on to consider the application of such language, through attempts to introduce a Rights of Patients Bill. A selection of patient’s rights guides and charters are also analysed, and the chapter suggests that it was unclear whether these were addressed to the individual patient, or all patients. A more collective understanding of patients’ rights was exhibited by organisations such as the Community Rights Project, which aimed to enhance democracy and accountability within the NHS through the language of rights. The establishment of Department of Health’s The Patient’s Charter in 1991, however, undermined such collective conceptualisations of rights. Addressed to the individual patient rather than all patients, The Patient’s Charter was indicative not only of an individualised approach to patients’ rights, but of a wider shift in the conceptualisation of the patient as consumer and who could speak for this figure.

Shared decision-making (SDM) between physician and patient is now widely considered to be a desirable goal in many healthcare contexts. However, little is known about current SDM practice in cancer care. Moreover, there are few data about physician perceptions of SDM or about outcomes for cancer patients. Now, most cancer patients are told the diagnosis, and expect to be informed about their disease and its treatment. There are many reasons for the recent increased emphasis on patients' rights. As communities have become better educated and information about healthcare issues has become more accessible, a fundamental shift in society's expectations of the appropriate role for physicians has occurred. Surveys of patients with advanced cancer have revealed not only that patients' desire for information and involvement in decision-making is high, but also that patients whose condition has recently worsened are more likely to want progressively less involvement in decision-making. This chapter reviews the literature pertaining to the potential relevance of the particular patient circumstance and the consequences for embracing SDM.

The rising number of prosecutions for medical manslaughter understandably is a matter of concern within the medical profession, and the complex ethical issues with which a medical professional must contend when confronted by a patient requesting assisted dying can only be exacerbated by the knowledge that his consequent actions may educe criminal liability. This chapter provides a UK clinician's perspective on these issues, and identifies three key issues in regard of the way ethical principles impact upon clinical practice at the end of life: greater demand, and respect for ‘patients' rights’; advances in medical practice that prolong life; and the Human Rights Act 1998. Together, these elements can lead to tensions for a doctor trying, at one and the same time, to respect his patient's vulnerability, assist the patient in articulating his or her authentic wishes, and to follow these wishes while remaining within the law.

This chapter examines how the ideal of “doctor knows best” came under attack from multiple directions during the years between 1965 and 1975, leading one doctor to say that “the patient must prescribe for the physician.” It begins with an overview of health care legislation associated with the Kennedy and Johnson administrations, including the 1962 Kefauver-Harris Amendment. It then considers the rise of movements that sought to return “medical power to the people,” including student radicals associated with the New Left, radical feminists, and environmentalists. It also looks at advocacy groups within the broader consumerist movement, with particular emphasis on Public Citizen's Health Research Group, founded by Ralph Nader and Sidney Wolfe in 1971, and how its approach to protecting what Nader termed “body rights” helped to bring medical consumerism into the mainstream of American politics. Finally, it discusses the 1970 Patients' Bill of Rights and its provisions on informed consent, along with the emergence of a more domesticated version of medical consumerism.

Over the past fifteen years or so, shared decision-making, a specific approach to making decisions in the medical encounter, has received considerable conceptual and practical attention among physicians, social scientists, and ethicists. In addition, governments and professional associations in different countries are developing patient charters/bills of rights to promote responsiveness to, and involvement of, patients in treatment decision-making. This widespread interest in shared decision-making derives from changes in ethical and legal notions of patient rights and is reflected in the language we now use to convey these: for example, patient rights of informed choice in treatment decision-making, rather than the more limited concept of informed consent. The former is a stronger message, encompassing broader principles of patient autonomy, control, patient challenge to physician authority, and patient participation in treatment decision-making. This chapter defines shared treatment decision-making and compares it to two other models: the paternalistic model and the informed model. It also discusses clinical contexts for partnership relationships and the use of treatment decision-aids as a means to implement shared decision-making.

This chapter examines the characteristics of infectious disease that raise special medical and social ethical issues, and explores ways of integrating both current bioethics and classical public health ethics concerns. Many of the ethical issues raised by infectious disease are related to these diseases' powerful ability to engender fear in individuals and panic in populations. The chapter addresses the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on humans by foreign microorganisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision-making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and bioethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights, and as a potential vector of disease that is of concern to the community.

Despite the impressive progress that has been made in neuroscience, little has changed for patients with disorders of consciousness who struggle for access to even basic diagnostic and rehabilitative services as they remain sequestered from the scientific advances, which might make a difference in their lives. Although this is certainly a question of access to care, it is more than an entitlement issue. It is fundamentally a question of human rights in which a class of patients have been denied voice and been victimized by segregation and disinterest. This chapter considers how current practices and ethical norms should evolve to reflect progress in the neurosciences for this neglected population. In making these recommendations, it draws parallels to the US Civil Rights Movement, a struggle worthy of emulation as we consider ways to achieve integration and parity in civic life for a population society has forgotten.

During the formative period of bioethics, the field of public health also directed attention largely away from infectious disease, to issues such as environmental degradation, workplace safety, smoking, and obesity. This chapter presents careful documentation of this development—as well as the virtually complete separation, until quite recently, of the fields of bioethics and public health. The past ten years, by contrast, have seen burgeoning development of public health ethics, including extensive efforts to link protection of public health with the right to health care and international human rights initiatives. The standard picture of public health ethics as utilitarian and bioethics as rights-based has shifted somewhat, especially with rights-based approaches to the HIV epidemic. Nonetheless, it is argued that public health ethics has yet to come to terms with the full theoretical challenges posed by infectious disease.

This chapter describes the battles in Congress over recent efforts to pass legislation preempting state common law claims with respect to federally regulated products and activities. It highlights two successful efforts to enact laws shielding manufacturers of firearms and certain vaccines from liability and an unsuccessful effort by the petroleum industry to shield itself from liability for damages caused by a fuel additive that leaked out of underground storage tanks into groundwater. The chapter then examines an ambitious attempt by victims of HMO and insurance company negligence to persuade Congress to fix an unanticipated and highly inequitable preemption situation by enacting a Patients' Bill of Rights. Although Congress devoted scant attention to federal preemption of common law claims in the 1960s and 1970s, the congressional front of the preemption war at the turn of the century was both heavily contested and highly visible.

This chapter elaborates the fragmentation of health care delivery systems in the European Union (EU). It reviews the content of the complex legal rules requiring EU Member States to reimburse citizens for health care received in other Member States. The EU Regulations on social security have placed the right of European citizens to move, work, and reside within the Union into practice. The codification of the “second track” of statutory entitlement to benefits for planned cross-border health care in the EU is the central part of the Patient Rights' Directive. This Directive has several advantages for patients who look for health care services abroad or have received such health care. In general, the new EU Directive on the application of patients' rights in cross-border health care is a first step to facilitate access to safe and high-quality cross-border health care in the EU and to ensure patient mobility throughout Europe.

It is a principle of research ethics, which also found expression in §30 of the Declaration of Helsinki, that every patient who participates in a research study should have access to the newly developed therapeutic and diagnostic measures in the end. However, it is doubtful in the case of medical studies in the framework of biobank institutions what kind of benefit participating donors of tissue or body material could have. One obvious possibility most participants of such studies would probably be interested in is the feedback of important individual health findings. This chapter compares legal, ethical, and institutional guidelines from different European countries and discusses the existing approaches in the framework of solidarity, which is often mentioned as a justification for research in population biobanks.

In the effort to control infectious disease, many different kinds of constraints have been employed: mandatory testing, required or observed treatment, and quarantine and isolation, among others. Although sometimes justified, these constraints have often been misused, as people were left to die in cholera-infected ships anchored offshore or in plague-stricken villages. This chapter begins with an overview of the ethical issues raised by different types of constraints used to control infectious disease. It then uses the PVV view to argue that constraints can be justified if they meet a set of procedural and substantive guarantees. The procedural guarantees are: that there be an important interest, supported by evidence, that the least restrictive alternative be chosen, that constraints be fully disclosed and transparent, and that there be an opportunity for reconsideration. The basic substantive guarantees are personal security, meeting basic needs for survival and treatment, effective communication, the equitable allocation of burdens, and compensation for loss.

This chapter argues that proper awareness of the benefits generated by medical research leads to the conclusion that within a society such as the UK, where everyone has a guarantee of future access to state-provided medical care, each has an ‘imperfect’ obligation to be willing to participate in medical research. It contends that if we recognize the existence of this obligation, then we have good ethical reasons to change the social structures which ensure and regulate participation in research. The chapter then discusses the relationship between these claims and the concept of ‘individual autonomy’. Finally, it discusses the relationship between such claims and arguments about patients' rights and physicians' obligations.

The chapter is framed by the story of psychiatric reform as it played out at Napa State Mental Hospital—from the late nineteenth century to June of 1978 when the Cramps performed their punk commentary on that history. When it opened in 1875, Napa State proudly implemented protocols of “moral treatment” by targeting the cultivation of “spirituality” in a gendered key. By the end of World War II, Napa State had become an enthusiastic adopter of electric shock therapy as the brain increasingly replaced the genitals as the source of sexual pathology and site of sexual differentiation. This chapter argues that as cybernetic strategies of organizational management took hold within mental asylums such as Napa State, neuromodulation became an efficient and effective form of gender regulation. By the 1970s Napa State became a front line in the battle between mental health institutions and grassroots critics of ECT, including many former patients. This chapter also showcases the practice of Dr. H. C. Tien, an independent electroconvulsive therapist and early target of the patient’s rights movement.

To dramatize deplorable health conditions and the race and class origins of pre-existing conditions, the Young Lords took-over Lincoln Hospital in July 1970. The occupation forced the construction of a modern medical building and creation of one of the Western world’s first acupuncture drug treatment centers. Cited as the first of its kind in American medicine, the group incited a public clinical hearing where a lay audience cross-examined doctors after the death of a Puerto Rican woman, the result of an abortion procedure conducted by an unsupervised medical resident. The Lords organized with non-medical hospital staff in the Health Revolutionary Unity Movement (HRUM) and white radical doctors in the Pediatric Collective under the banner, Think Lincoln. Together they drafted the earliest known Patient Bill of Rights. In the wake of late 60s draconian cuts in social spending, they and others staved off the advent of neoliberal social policies in the late 1970s. Historians interpret sixties revolutionary nationalism as a rejection of coalitions with white Americans. These alliances suggest otherwise. But the Lords challenged power dynamics in cross-racial and cross-class alliances, rejecting uninterrogated racial prejudices and liberal tendencies of middle-class white radicals and the potential for their disproportionate influence in coalitions.

This book looks at the impact of the expanding power of the EU in terms of fundamental rights and values. The current chapter lays down the framework for this analysis. Law did not always have a central role to play in the context of medicine and health. The role of law grew after the Second Word War and the Nuremberg Doctors Trials (1947), in which preventing the repetition of atrocities that were committed in the name of medicine became a guidepost for future law regarding patients’ rights and bioethics. In the period after the War, across the EU Member States, health law developed as a legal discipline in which a balance was struck in medicine and public health between law, bioethics, and fundamental rights. The role of EU fundamental rights protections in the context of public health and health care developed in relation with the growth of multilevel governance and litigation (national, international, Council of Europe, and European Union). For the analysis here, this chapter develops an EU rights and values framework that goes beyond the strictly legal and allows for a ‘normative language’ that takes into consideration fundamental rights as an expression of important shared values in the context of the European Union. The perspective of EU fundamental rights and values can demonstrate possible tensions caused by EU health policy: implications in terms of fundamental rights can show how highly sensitive national policy issues may be affected by the Member States’ participation in EU policymaking activities.

This chapter examines developments regarding EU legislation in the area of health care, rather than public health. The chapter is a case study looking into the processes and the involvement of different EU institutional actors and policy mechanisms in the adoption of the Directive on patients’ rights in cross-border health care (‘the Directive’). First, the chapter introduces the Directive itself, and considers whether it expands access to health care across the EU. Second, it turns to the way the Directive was adopted, focusing particularly on the different roles of EU institutional actors and the discourse and controversies that developed in health care in the EU as a result of the legislative process. Last, the chapter addresses the expansion of EU health-care policy beyond the adoption of the new Directive that resulted from the increased discourse on health care and its impact for individual rights and access to health care.