Bioethics for clinicians: 6. Advance care planning.

Advance rate planning is a process whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care. Grounded in the ethical principle of autonomy and the legal doctrine of consent, advance care planning helps to ensure that the norm of consent is respected should the patient become incapable of participating in treatment decisions. Physicians can play an important role by informing patients about advance care planning directing them to appropriate resources, counselling them as they engage in advance care planning and helping them to tailor advance directives to their prognosis.     

Patient advocate or secret agent?

The "doctor knows best" standard of consent to care in England is held to be a possible early warning of changes to come in the United States as patient care is increasingly determined by economics and scarce resources. Political decisions not to pay for certain treatments or not to offer all technologies to all persons should not be disguised as medical decisions by not telling patients of possible therapies. Deception and failure to inform are violations of the physician's fiduciary relationship with the patient.     

Consent and end of life decisions

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or "proxy" consents. Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable. Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary (one of the conjoined twins in a case discussed in the paper), or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons.     

Patients' rights--why the Australian courts have rejected 'Bolam'.

This point of view compares the issue of informed patient consent primarily as it operates in Australia and the United Kingdom. It affords an overview, also, of the applicable law in the United States and Canada. It particularly focuses on the legal test to be applied to patient consent as established in the Bolam case in the United Kingdom. The case, following its approval by the House of Lords, holds that the negligent standard in patient consent situations is to be determined, in cases of dispute, in accordance with standards as viewed by a proper body of competent medical practitioners. By contrast, the law in the United States is premised on the notion of the fundamental right of patients to determine what should or should not be done with their own bodies. In Australia the Bolam test has been rejected by the High Court of Australia following earlier decisions in the State Supreme Courts. The Australian courts did not accept that the setting of standards by the medical profession was an acceptable way of determining the entitlements of a patient who has suffered harm. The author places this discussion in the context of greater community awareness of medical procedures, the heightened accountability of professionals and the increasing practice of having a substantial patient input into medical decisions. He also suggests that the differing social and professional attitudes to authority and fundamental rights to be found between Australia and the United Kingdom have influenced the outcome of the cases in the higher courts of both countries. He suggests that the Bolam test is an illustration of the tendency of authority in the United Kingdom to believe that 'Nanny know best'.     

Issues of consent and the primary-school medical

This article discusses what level of consent is needed from a child or parent before a primary-school medical can take place (i.e. where children are aged under 12). It also considers whether there are occasions when a doctor can see a child if the parents have failed to give consent or have explicitly refused consent. Primary-school children are considered incompetent to make decisions about their own medical treatment and so their consent does not need to be gained before a medical takes place, although it is highly desirable to obtain it. However, a doctor cannot justify a decision to see a child purely in terms of the benefit conferred on the child. Parents can be wronged if their wishes are ignored and usually those wishes should be considered overriding. Normally, general consent, which need not be fully informed, is needed before a school medical. However, if a child is considered to be in danger of being harmed significantly or suspected to have a major medical condition, a medical should go ahead regardless of the level of consent obtained from the parent, so that a reasonable standard of health is maintained for the child.     

Science, ethics, and the making of clinical decisions. Implications for risk factor intervention

Recent improvements in the clinical care of individual patients are rooted in advances in two distinct fields of modern medicine: biomedical research and clinical ethics. In this article, we review the differing roles of these two disciplines in guiding decision making for individual patients. Particular attention is placed on decisions involving risk factor intervention, using the common problem of mild hypertension as an illustration. Both the importance and the limitations for decision making of some recently published clinical trials are reviewed. Differences in interpretation of these trials are a source of major disputes about the proper threshold for medical intervention. The ethical aspects of treatment decisions are then reviewed, with particular emphasis on the doctrine of informed consent and on the role of patient participation in treatment decisions. Finally, new directions for clinical research are suggested that may yield a more complete scientific basis for treatment decisions and that may aid in fulfilling the ethical ideals that underlie the physician-patient relationship.     

Choice is not the issue. The misrepresentation of healthcare in bioethical discourse

The principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical practice reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion.     

Bioethics for clinicians: 4. Voluntariness.

In the context of consent, "voluntariness" refers to a patient's right to make health care choices free of any undue influence. However, a patient's freedom to make choices can be compromised by internal factors such as pain and by external factors such as force, coercion and manipulation. In exceptional circumstances--for example, involuntary admission to hospital--patients may be denied their freedom of choice; in such circumstances the least restrictive means possible of managing the patient should always be preferred. Clinicians can minimize the impact of controlling factors on patients' decisions by promoting awareness of available choices, inviting questions and ensuring that decisions are based on an adequate, unbiased disclosure of the relevant information.     

Consent for anaesthesia

"Informed consent" is a legal instrument that allows individuals to define their own interests and to protect their bodily privacy. In current medical practice, patients who have consented to surgery are considered to have implied consent to anaesthesia, even though anaesthesia is associated with its own particular set of risks and consequences that are quite separate from those associated with surgery. In addition, anaesthetists often perform interventions that are the only medical treatment received by a patient. Anaesthetists, therefore, should always obtain separate consent for anaesthesia, and should regard the process of consent as a stimulus for active, fluid reciprocal discussion with patients about treatment options.     

Informed consent in emergency research. Prehospital thrombolytic therapy for acute myocardial infarction

Can the conscious patient in the midst of a medical emergency provide adequate informed consent for a clinical research protocol? Adequate consent is crucial to the ethical conduct of clinical trials, including those performed in emergency settings. We examine the problem of emergency informed consent. As an illustrative case, we discuss a pilot trial of prehospital thrombolytic therapy for myocardial infarction. Federal regulations for clinical research do not provide clear guidelines on emergency research in the conscious patient. Clinical investigators currently approach emergency consent in four ways: (1) avoid such research, (2) omit the consent process, (3) obtain deferred consent, or (4) obtain customary consent. We suggest a fifth alternative, two-step consent, which permits the conduct of emergency research while protecting the rights of the emergency research subjects. Such a process may serve as an alternative solution for future studies faced with the problem of informed consent in emergencies.     

Refusal of treatment.

Patients' thoughts, feelings and desires are communicated in a variety of ways, and require sympathetic, critical interpretation. Patients need clear, evidence-based medical information so that they can make their own decisions about whether to consent to or refuse medical treatment. Treatment refusal may provide an opportunity to introduce patients to advance care planning. Unconscious motivations in doctors may obstruct good clinical decision-making. Although respect for the patient's responsibility to make healthcare decisions should be a condition of the clinical relationship, healthcare decision-making is a collaborative process.     

Legal considerations. Current Florida law.

Legislation enacted in 1991 requires physicians licensed under Chapters 458 or 459, Florida Statutes, to earn continuing medical education in the area of HIV and AIDS and specifies what should be covered in the program. The law no longer requires that certain information be imparted to the patient prior to testing for the human immunodeficiency virus. Information is presented on who can consent to testing, when consent is not required, pre- and post-testing requirements, confidentiality of patient records and possible disclosure and testing as a condition of treatment or admission.     

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.     

Physicians in health care management: 8. The patient-physician partnership: decision making, problem solving and the desire to participate.

How reasonable are expectations that patients will participate in care decisions? The previous article in this series reviewed models of the patient-physician relationship and views on the extent to which patients want to be informed; it also described one information tool--the interactive videodisc. This article reviews literature on the extent to which patients wish to be involved in making decisions about their care. Neither "sensitive paternalism" nor "informed consent" appears to be ideal. The author suggests a distinction between two elements of choice: problem solving and decision making. This distinction helps in identifying appropriate roles for patient and provider, thereby leading to genuine shared decision making.     

A critique of using age to ration health care.

Daniel Callahan has argued that economic and social benefits would result from a policy of withholding medical treatments which prolong life in persons over a certain age. He claims 'the real goal of medicine' is to conquer death and prolong life with the use of technology, regardless of the age and quality of life of the patient, and this has been responsible for the escalation of health care expenditure. Callahan's proposal is based on economic rationalism but there is little evidence to suggest that substantial economic savings could be achieved. Moreover, his argument raises serious moral objections. A policy of withholding treatments from members of a social group involves elements of compulsion and discrimination, both of which would intrude on the doctor-patient relationship, undermine the autonomy of elderly patients, and invoke the slippery slope towards involuntary forms of euthanasia. Life-death decisions should be based on more than the one criterion of age, and take account of more relevant factors such as the patient's usual state of well-being, her/his expressed wishes, informed consent and the type of illness. Any move to the implementation and enforcement of the policy Callahan recommends would be rejected by health professionals and the public.     

Is respect for autonomy defensible?

Three main claims are made in this paper. First, it is argued that Onora O'Neill has uncovered a serious problem in the way medical ethicists have thought about both respect for autonomy and informed consent. Medical ethicists have tended to think that autonomous choices are intrinsically worthy of respect, and that informed consent procedures are the best way to respect the autonomous choices of individuals. However, O'Neill convincingly argues that we should abandon both these thoughts. Second, it is argued that O'Neill's proposed solution to this problem is inadequate. O'Neill's approach requires that a more modest view of the purpose of informed consent procedures be adopted. In her view, the purpose of informed consent procedures is simply to avoid deception and coercion, and the ethical justification for informed consent derives from a different ethical principle, which she calls principled autonomy. It is argued that contrary to what O'Neill claims, the wrongness of coercion cannot be derived from principled autonomy, and so its credentials as a justification for informed consent procedures is weak. Third, it is argued that we do better to rethink autonomy and informed consent in terms of respecting persons as ends in themselves, and a characteristically liberal commitment to allowing individuals to make certain categories of decisions for themselves.     

The patient who refuses nursing care

OBJECTIVES: The aim of this paper is to examine the way in which nurses manage patients who refuse nursing care procedures. DESIGN: This paper reports on a qualitative study which was undertaken to explore the way in which nurses obtain consent prior to nursing care procedures. Focus groups were carried out to obtain background data concerning how consent is obtained. Critical incidents were collected through in depth interviews as a means of focusing on specific incidents in clinical practice. SETTING: Two teaching hospitals in England. PARTICIPANTS: Purposive sample of qualified nurses. RESULTS: When a patient refuses nursing care, nurses respond by giving information until the patient finally accedes to the procedure. Nurses will go to great lengths to achieve patients' agreement to the procedure, but the extent to which the agreement remains voluntary cannot be ascertained by the data collected in this study. If the patient does not eventually agree to a procedure, there is evidence that nurses will administer the care in the absence of consent. CONCLUSIONS: Nurses are concerned to obtain the patient's consent prior to the administration of nursing care but if this cannot be achieved do not regard obtaining consent as an absolute requirement. Consent is preferred, but not considered essential. Nurses have some understanding of the principles of informed consent but do not apply them to everyday clinical nursing practice.     

Withholding and withdrawing life support in critical care settings: ethical issues concerning consent

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions judged too futile to offer. They thus retain greater decision-making burden (and power) and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients (or proxies) in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of (and submission to) benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made.     

Incapacity to give informed consent owing to mental disorder

What renders some mentally disordered patients incapable of informed consent to medical interventions? It is argued that a patient is incapable of giving informed consent owing to mental disorder, if a mental disorder prevents a patient from understanding what s/he consents to; if a mental disorder prevents a patient from choosing decisively; if a mental disorder prevents a patient from communicating his/her consent; or if a mental disorder prevents a patient from accepting the need for a medical intervention. This paper holds that a patient's capacity to give informed consent should be assessed clinically by using these conditions necessary for informed consent, and should be assessed specifically for each intervention and specifically at the time when the consent has to be given. The paper considers patients' incapacity to give informed consent to treatment, to give informed consent to be examined clinically, and to give informed consent to participate in research.     

Children, medical treatment and contraceptive agents. Is parental consent necessary?

In summary, what should you do when approached by a minor who seeks medical advice or treatment? Emergency. Emergency medical treatment can be provided without parental consent. Non-emergency. Non-emergency medical treatment can be provided without parental consent if the patient is capable of understanding the nature and consequences of the treatment. Contraceptive agents/medical termination of pregnancy. Contraceptive advice or treatment, or medical termination of pregnancy, can be provided without parental consent if the five conditions laid down by the House of Lords are satisfied.