Problems of capacity, consent and confidentiality




For the clinician managing a woman who has been violated sexually, core values of compassion, understanding and concern for the woman’s distress are essential. The nature of the violation itself places the woman in a uniquely dependant, anxious, vulnerable and exploitative state. Capacity, consent and confidentiality derive from the principle of autonomy. Informed consent entails a process of information sharing and decision making based on mutual respect and participation. Practitioners should have communication, listening and interpretative skills. One of the greatest challenges is the difficulty in ascertaining whether or not the woman truly understands and grasps the nature of her condition. There are many challenges to obtaining a valid consent in the real world. Information obtained from the woman could be shameful and embarrassing, but would be used in a court of law. She should be informed of the potential for breach of confidentiality. These issues are explored and examples of practical application of the relevant themes are given from the England and Wales jurisdiction.


Introduction


The impact of sexual violence on physical and mental health is profound. It is associated with a range of physical, sexual and reproductive health problems, with both immediate- and long-term consequences. In addition, social well-being can also be overwhelmingly affected, with survivors suffering stigmatisation and ostracism from their families and others as a result. Rape and other forms of sexual assault are frequently used as a weapon of war and as forms of attack on the enemy, where sexual violation typifies the conquest and degradation of its women. Where women transgress social and moral codes, it can be used as a punishment against them (e.g. the gang raping of lesbian women in some countries). Although sexual violence is a global phenomenon, research is lacking in this important field. Where research has been conducted on the subject, available data suggest that, in some countries, the sexual violence is by an intimate partner in about one in four cases. In the instance of adolescent girls, the data suggests that nearly one-third describe their first sexual encounter as being coerced. Recently, complaints of sexual violation against practitioners during the course of an intimate examination have also been on the increase, bringing to fore the importance of the precautionary measure of having a chaperone present in these settings.


For the clinician managing a woman who has been violated sexually, core values of compassion, understanding and concern for the woman’s distress are essential. Specifically, the nature of the violation itself places the woman in a uniquely dependant, anxious, vulnerable and exploitative state. She is forced into a position of trusting the clinician in a relationship of relative powerlessness. Moreover, the clinician invites that trust when his or her knowledge and expertise are offered to the service of the woman. An extremely high degree of competence is expected and required of practitioners who manage the sexually violated woman. This competence is not limited to scientific knowledge and technical skills, but also includes ethical knowledge and skills and an understanding of the woman’s human rights and how the law applies to, and protects, the woman under these circumstances. Clearly, a significant number of serious and sensitive ethical issues arise when caring for these women. The focus of this paper, however, will be on particular concerns regarding the problems of capacity, consent and confidentiality that emerge in this setting. All these derive from the principle of autonomy. For an understanding of how these difficulties should be addressed, it would be important for the reader to appreciate the principle of autonomy and how it applies in this environment.




Autonomy


Liberty and agency


The traditional Hippocratic belief that one could do almost anything on a patient as long as the principles of beneficence (best interests) and non-maleficence (no harms) were upheld was considerably revolutionised over the past century. Paternalism, the belief that the healthcare practitioner should protect or advance the interests of the patient, even if contrary to the patient’s own immediate desires or freedom of choice, no longer has a place in the healthcare context. As a result of the Nuremburg Trials, the Universal Declaration of Human Rights, and several other codes and guidelines emanating from international bodies, such as the World Medical Association, the value of autonomy and self-determination have been recognised as paramount. Respecting autonomous choices of people is embedded deep in common morality, and in health care it is used primarily to examine decision making, privacy and confidentiality. Decision-making includes informed consent and informed refusal.


The word ‘autonomy’ derives from the Greek autos (‘self’) and nomos (‘rule’, ‘governance’ or ‘law’). Initially, it was used to refer to the self-rule or self-governance of independent Hellenic city-states. Today, ‘autonomy’ extends to individuals and has acquired meanings as diverse as ‘self-governance, liberty rights, privacy, individual choice, freedom of the will, causing one’s behaviour, and being one’s own person.’ Essential to personal autonomy as distinguished from political self-rule is the freedom from controlling interferences by others and from personal limitations that prevent meaningful choice. Personal limitations include lack of understanding, low levels of literacy and cultural barriers. Hence, the autonomous person acts freely in accordance with a self-chosen plan whereas, in contrast, a person with diminished autonomy is controlled by others in one way or another, or is just not capable of deliberating, acting on the basis of his or her desires or plans, or both. A compelling argument can, therefore, be made that women in situations of gender discrimination, oppressive relationships, and institutions like prisons could have diminished autonomy and, as a consequence, may be constrained from acting on the basis of their desires and plans. Thus, it follows, that for autonomy to be respected, two conditions are essential: liberty (independence from controlling influences); and agency (capacity for intentional actions).


Autonomous choice


Autonomous choice, on the other hand, is actual self-governance rather that the capacity for self-governance. Capacity refers to the ability to reason, understand and deliberate. Even self-governing people may fail to make autonomous choices, either by waivering their choices or because of temporary constraints imposed upon them by, for example, anxiety, depression or illness. The sexually violated woman, who, in different contexts may have the ability to self-govern, because of physical and mental harms and resultant incapacity, may lack the facilities to make autonomous choices. However, an autonomous person who signs a consent form without reading or understanding the form fails to act autonomously although she is qualified to do so. Furthermore, in the medical world, difficulties experienced with autonomous choice could be caused by the nature of the doctor–patient relationship, with the patient being in the dependant position, and the doctor being in a standing of authority.


Degrees of autonomy


In addition, actions can be autonomous by degrees because there are different degrees of understanding and controlling influences that determine actions. A broad continuum exists for both these states, ranging from fully present to wholly absent. For an action to be autonomous, however, a substantial degree of understanding and freedom from constraint are required, and not a full understanding and complete absence of influence, because practically speaking, in the real world, people’s actions are rarely, if ever, fully autonomous. Questions are often raised about what ‘substantial’ and ‘insubstantial’ actually denote, and it can be stated that the line between these two often seems arbitrary. However, ‘thresholds marking substantially autonomous decisions can be carefully fixed in light of specific objectives such as meaningful decision-making’, as seen in accepting of proposed medical interventions and decisions about participation in research. In addition, allowing for different degrees of autonomy sanctions a move away from a narrow focus of autonomy that is restricted to independence from others and permits for the introduction of the importance of intimate and dependant relationships between people into the discourse. The crucial role played by communal life and human relationships in providing the matrix for the development of the self should not be underestimated.


Respecting autonomy


To have the capacity of being an autonomous agent does not equal being respected as an autonomous agent, which, at a minimum, acknowledges the agent’s right to hold views, to make choices, and to take actions based on personal values and beliefs. To respect one’s autonomy involves both respectful attitude and respectful action towards the individual, thereby creating an enabling environment for one to act autonomously. It follows, therefore, that respecting ones autonomy requires more than obligations of non-intervention. Often, autonomous actions depend on material co-operation of others in making options available. Doctors have obligations to disclose information, probe for, and ensure understanding and voluntariness and to facilitate decision-making. Moreover, patients should be equipped to overcome their dependence in the doctor–patient relationship and to achieve as much control as they can or want. This positive obligation on the doctor is a consequence of the special fiduciary relationship that practitioners have with their patients. To respect autonomy includes obligations to maintain capacities for autonomous choice while allaying fears and anxieties that interfere with, or disrupt, the exercise of autonomous choice; in the case of the sexually violated woman, this must be executed with extreme sensitivity. Correlative to this obligation is the right to self-determination, which supports various autonomy rights, including those of confidentiality and privacy. Although disagreement exists about the scope of these rights, there is agreement that autonomy rights can be constrained by rights of others. Therefore, respect for autonomy has only prima facie ranking, and can be overridden by competing moral considerations.


Autonomy: summary


In summary, autonomous actions are the outcome of deliberations and choices by rational agents as persons in the moral sense. Rational persons meet the criteria necessary to decide what is in their own best interests. Healthcare practitioners have a duty to recognise and respect this value in their patients. Not to do so would not only violate their patients’ autonomy, but would be synonymous with treating them as less than persons. An autonomous person is someone who has the ability to deliberate about personal goals and to act under the direction of such deliberation. To respect autonomy denotes valuing autonomous persons’ considered opinions and choices and refraining from obstructing their actions unless they are clearly detrimental to others. Now that the philosophical backdrop to autonomy has been discussed, the rest of the paper will focus on the application of this principle in the healthcare context, with specific reference to the sexually violated woman. The application applies both to management and research issues.




Autonomy


Liberty and agency


The traditional Hippocratic belief that one could do almost anything on a patient as long as the principles of beneficence (best interests) and non-maleficence (no harms) were upheld was considerably revolutionised over the past century. Paternalism, the belief that the healthcare practitioner should protect or advance the interests of the patient, even if contrary to the patient’s own immediate desires or freedom of choice, no longer has a place in the healthcare context. As a result of the Nuremburg Trials, the Universal Declaration of Human Rights, and several other codes and guidelines emanating from international bodies, such as the World Medical Association, the value of autonomy and self-determination have been recognised as paramount. Respecting autonomous choices of people is embedded deep in common morality, and in health care it is used primarily to examine decision making, privacy and confidentiality. Decision-making includes informed consent and informed refusal.


The word ‘autonomy’ derives from the Greek autos (‘self’) and nomos (‘rule’, ‘governance’ or ‘law’). Initially, it was used to refer to the self-rule or self-governance of independent Hellenic city-states. Today, ‘autonomy’ extends to individuals and has acquired meanings as diverse as ‘self-governance, liberty rights, privacy, individual choice, freedom of the will, causing one’s behaviour, and being one’s own person.’ Essential to personal autonomy as distinguished from political self-rule is the freedom from controlling interferences by others and from personal limitations that prevent meaningful choice. Personal limitations include lack of understanding, low levels of literacy and cultural barriers. Hence, the autonomous person acts freely in accordance with a self-chosen plan whereas, in contrast, a person with diminished autonomy is controlled by others in one way or another, or is just not capable of deliberating, acting on the basis of his or her desires or plans, or both. A compelling argument can, therefore, be made that women in situations of gender discrimination, oppressive relationships, and institutions like prisons could have diminished autonomy and, as a consequence, may be constrained from acting on the basis of their desires and plans. Thus, it follows, that for autonomy to be respected, two conditions are essential: liberty (independence from controlling influences); and agency (capacity for intentional actions).


Autonomous choice


Autonomous choice, on the other hand, is actual self-governance rather that the capacity for self-governance. Capacity refers to the ability to reason, understand and deliberate. Even self-governing people may fail to make autonomous choices, either by waivering their choices or because of temporary constraints imposed upon them by, for example, anxiety, depression or illness. The sexually violated woman, who, in different contexts may have the ability to self-govern, because of physical and mental harms and resultant incapacity, may lack the facilities to make autonomous choices. However, an autonomous person who signs a consent form without reading or understanding the form fails to act autonomously although she is qualified to do so. Furthermore, in the medical world, difficulties experienced with autonomous choice could be caused by the nature of the doctor–patient relationship, with the patient being in the dependant position, and the doctor being in a standing of authority.


Degrees of autonomy


In addition, actions can be autonomous by degrees because there are different degrees of understanding and controlling influences that determine actions. A broad continuum exists for both these states, ranging from fully present to wholly absent. For an action to be autonomous, however, a substantial degree of understanding and freedom from constraint are required, and not a full understanding and complete absence of influence, because practically speaking, in the real world, people’s actions are rarely, if ever, fully autonomous. Questions are often raised about what ‘substantial’ and ‘insubstantial’ actually denote, and it can be stated that the line between these two often seems arbitrary. However, ‘thresholds marking substantially autonomous decisions can be carefully fixed in light of specific objectives such as meaningful decision-making’, as seen in accepting of proposed medical interventions and decisions about participation in research. In addition, allowing for different degrees of autonomy sanctions a move away from a narrow focus of autonomy that is restricted to independence from others and permits for the introduction of the importance of intimate and dependant relationships between people into the discourse. The crucial role played by communal life and human relationships in providing the matrix for the development of the self should not be underestimated.


Respecting autonomy


To have the capacity of being an autonomous agent does not equal being respected as an autonomous agent, which, at a minimum, acknowledges the agent’s right to hold views, to make choices, and to take actions based on personal values and beliefs. To respect one’s autonomy involves both respectful attitude and respectful action towards the individual, thereby creating an enabling environment for one to act autonomously. It follows, therefore, that respecting ones autonomy requires more than obligations of non-intervention. Often, autonomous actions depend on material co-operation of others in making options available. Doctors have obligations to disclose information, probe for, and ensure understanding and voluntariness and to facilitate decision-making. Moreover, patients should be equipped to overcome their dependence in the doctor–patient relationship and to achieve as much control as they can or want. This positive obligation on the doctor is a consequence of the special fiduciary relationship that practitioners have with their patients. To respect autonomy includes obligations to maintain capacities for autonomous choice while allaying fears and anxieties that interfere with, or disrupt, the exercise of autonomous choice; in the case of the sexually violated woman, this must be executed with extreme sensitivity. Correlative to this obligation is the right to self-determination, which supports various autonomy rights, including those of confidentiality and privacy. Although disagreement exists about the scope of these rights, there is agreement that autonomy rights can be constrained by rights of others. Therefore, respect for autonomy has only prima facie ranking, and can be overridden by competing moral considerations.


Autonomy: summary


In summary, autonomous actions are the outcome of deliberations and choices by rational agents as persons in the moral sense. Rational persons meet the criteria necessary to decide what is in their own best interests. Healthcare practitioners have a duty to recognise and respect this value in their patients. Not to do so would not only violate their patients’ autonomy, but would be synonymous with treating them as less than persons. An autonomous person is someone who has the ability to deliberate about personal goals and to act under the direction of such deliberation. To respect autonomy denotes valuing autonomous persons’ considered opinions and choices and refraining from obstructing their actions unless they are clearly detrimental to others. Now that the philosophical backdrop to autonomy has been discussed, the rest of the paper will focus on the application of this principle in the healthcare context, with specific reference to the sexually violated woman. The application applies both to management and research issues.




Informed consent


Over time, patient autonomy has achieved widespread acceptance, with patients being the ultimate decision makers in matters that affect themselves. The clinical autonomy and freedom in determining patient management that medical practitioners traditionally enjoyed has been significantly curbed by, inter alia , governments, medical insurers and the economic climate. Hence, autonomy or self-determination, one of the foundational principles in medical practice, has changed to a large extent over the years both for practitioners and patients.


The basic paradigm of autonomy in the healthcare context is informed consent. Whereas in recent years, the primary justification advanced for requiring of informed consent has been the protection of autonomous choice, risk reduction and avoidance of unfair exploitation are still offered as reasons by many professional, regulatory and institutional controls. Consent occurs under varying conditions. It may be perfunctory, made reluctantly or under intense pressures that could render it invalid.


Categories of informed consent


The different categories of informed consent include the following :


Tacit consent


Tacit consent is expressed passively by omissions. The patient remains silent and does not object. Consider when a woman who is sexually violated is asked whether she objects to having her husband present during the consultation. A lack of objection constitutes consent (assuming she understands the question and the need for consent). Silence constitutes valid tacit consent as long as understanding and voluntariness are present.


Implicit or implied consent


Implicit or implied consent is consent that is inferred from actions. Consent to one medical procedure is often implicit in a specific consent to another procedure (e.g. consent to passage of a speculum is implied when the woman consents to undress for an examination).


Express consent


Express consent is consent in these circumstances that is articulated implicitly, either verbally or in writing. Express verbal consent will suffice for bladder catheterisation. For surgical procedures, however, express written consent is usually a requisite. Consider the case of a woman who has given consent for routine blood tests. Do doctors now have a valid consent for a human immunodeficiency virus (HIV) test? Can appeal be made to a specific consent implicit in the general consent to blood tests? In general, testing for HIV antibodies without specific express consent will be difficult to justify because of the psychological and social risks associated with the test. Psychological risks include anxiety and depression. Social risks include stigma, discrimination and breaches of confidentiality.


The category of consent acceptable in clinical practice is usually risk-dependant. Non-express consent is adequate where no risks or low risks are associated with the management proposed. As risk increases, the requirement for obtaining express consent increases. Even in situations where express consent is necessary, with increasing risk, written consent is recommended.


Informed consent as a process


Founded on basic ethico-legal principles, the doctrine of informed consent entails a process of information sharing and decision making based on mutual respect and participation. It should be considered a process and procedure and not merely an affirmation, ritual or signature on a piece of paper at a particular point in time. The idea behind informed consent is that it facilitates the performance of professional tasks in a morally defensible way by bringing the patient’s informed preferences into the healthcare practitioner’s plans. Being well informed on entering the decision-making process protects the patient’s dignity in the healthcare environment. Informed consent is typically given over time and can be withdrawn over time. It is essential that informed consent is viewed as a temporal process and the common view that the signed form is the essence of informed consent is recognised as being incorrect.


Practitioner requirements


The fundamental belief behind informed consent is that trust between the doctor and the patient will be fostered and engendered. An obvious requirement for ensuring that consent is truly informed is a practitioner with communication, listening and interpretative skills. In addition, it is an ethical imperative that the practitioner recognises and respects the patient’s choice of decision, which may be that of informed refusal rather than consent. The practitioner that provides information to a patient acknowledges an imbalance of information between them which, if not addressed, will compromise the patient’s autonomy. It is this imbalance of information that is the root of patient vulnerability. Knowledge and information of a patient’s ailment will empower the patient to make the choice most suitable to his or her needs and desires.


Legal aspects


The requirement for informed consent is not just an ethical one but also a legal one. In law, the doctor–patient relationship is usually a contractual one, with the contract taking the form of an implied agreement that the practitioner will make a diagnosis and treat the patient in accordance with generally accepted standards. A contract implies that the parties involved in the contract have full knowledge of the situation and that they have willingly contracted. All forms of management must be discussed with the patient first. A related legal concept is the idea of a fiduciary relationship, whereby the patient places a special trust or confidence in the doctor. Hence the doctor violates his or her legal duty if information that is necessary for a patient to make a rational decision regarding care is withheld.


Whether or not there was consent in a particular case is a question of fact. In law, there is no difference between written or oral consent, except that written consent is easier to prove should a dispute ensue. It is the duty of the practitioner to ensure that consent has been obtained from the patient. The practitioner cannot only rely on other healthcare professionals, including nursing staff, to ensure that consent has been obtained.


Components of a valid consent process


The ethical and legal components of a valid consent process are divided into three sets of elements ( Table 1 ). These elements and sub-elements are viewed as the building blocks in the definition of informed consent, and the threshold elements have to be satisfied first before the other sets of elements can be added on.


Nov 8, 2017 | Posted by in OBSTETRICS | Comments Off on Problems of capacity, consent and confidentiality

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