2.1. From Informed Consent to Informed Choice
Respect for autonomy and beneficence are two of the fundamental principles enshrined in medical ethics (
5, 10, 12). Beneficence is the principle which obligates health care providers to “do good” or act solely for the benefit of their patients, while respect for autonomy recognizes the inherent right of patients to make decisions based on their own values and beliefs ( 5). Both beneficence and respect for autonomy are the underlying principles which obligate caregivers to provide patients with informed consent for tests, procedures, interventions or research ( 5). One can chart the evolution of the concept of “informed consent” from its precursor in the Nuremberg Code of 1947, to the beginning of its current manifestation when it first appeared in 1957 court documents ( 13). Informed consent obligates care providers to ensure that patients have enough information to make reasoned, uncoerced and autonomous decisions about their health care ( 5, 10, 14). However, as medicine has advanced, modern health care and decision making have profoundly changed. Modern health care has resulted in the ability to extend life, redefine death, harvest and transplant organs, and enable artificial reproduction. As a result, health care choices are increasingly complex and treatment decisions have a greater potential to impact patients’ long term health and lifestyle-such as the ability to work, care for children or participate in valued life activities ( 10). As a result of the complexity of decisions, health care choices are increasingly dependent on factors that transcend professional training and knowledge onto those that are related to individual patient values and goals ( 7). While in the past, informed consent was viewed as sufficient to fulfill ethical obligations of beneficence and autonomy, this model has been critiqued in as insufficient within the context of modern health care. The informed consent model of decision making often skews patient decisions to those emphasized by the physician, based on the physician’s preferences, values, treatment choices and levels of risk aversion ( 10). The result is that caregiver authority and expertise are preferenced over patient values and lived experience ( 7). Consequently, informed consent focuses more on the ethical obligation of beneficence and undervalues the importance of autonomy ( 3, 7, 10). As respect for autonomy has become the dominant and controlling principle in medical ethics over the past few decades, consent to physician provided choices is no longer considered sufficient to legitimately support patient autonomy. Instead the emphasis has shifted towards valuing patients’ preferences and sharing information to allow patients to make decisions based on their belief systems and goals ( 3, 7, 10). As a result, philosophies of health care have moved from informed consent to the more complex notion of informed choice ( 3). Informed choice is increasingly recognised as a more progressive and preferable approach than previous notions of informed consent. Informed choice not only aims to supports patient autonomy, but attempts to include processes to ensure patients are not coerced into certain courses of action ( 15). In so doing, the process of informed choice shifts the balance away from professional dominance and paternalism towards individual knowledge and control ( 7, 8, 10). This model of informed choice over informed consent values beneficence and autonomy as equally important pillars of ethics. The focus on autonomy is not viewed as being in conflict with the principle of beneficence, but a higher standard of beneficence which works to “do good” for the patient both by providing choices and supporting autonomy to exercise different options ( 10). Following this model, the role of the health care provider is not that of an authority figure but rather a trusted guide or advisor ( 16). This represents a fundamental shift in both health care and bioethics from the “historical roles of the paternalistic physician and the compliant patient to a new model of an autonomous, informed, and participatory patient” ( 10, 17, 18). 2.2. Defining Informed Choice Within Bioethics: The Canadian Model of Midwifery
Both the concepts of informed consent and informed choice are based on several principles of bioethics, namely: autonomy, competence/capacity, disclosure, voluntariness, beneficence and nonmaleficence (
19). While the ethical foundations for both concepts are similar, they are distinct approaches to health care decision making and the patient-care giver relationship ( 7, 10, 20). In response to dissatisfaction with informed consent and recognition of its inadequacies, the midwifery model in Canada incorporated informed choice as a core tenet of care as it developed into a recognized profession ( 8, 9, 20, 21). The definitions of informed choice in this model not only shift the locus of control from caregiver to patient, but incorporate feminist bioethics principles which further problematize informed choice as it is applied in mainstream bioethics ( 3, 20). Mainstream bioethicists assert that autonomy can only be effectively exercised when patients have enough information to enable choice ( 10, 22). Following this, health care providers are required to disclose all relevant medical information to patients so they can make medical decisions based upon their personal beliefs, values, and life goals. Within informed choice as a standard, health care providers must respect patients' decisions even when those decisions do not promote their physical well-being or conform with the caregiver’s medical judgment ( 10, 23). However feminist bioethicists recognize that people, and women in particular, are uniquely situated in society and thereby influenced in decision making by roles and power dynamics which are culturally embedded ( 24). When simply sharing information, there often remains an inherent hierarchal relationship between patient and caregiver- resulting in a kind of guised paternalism. In order to address this, the Canadian model of midwifery actively seeks to both recognize the hierarchy and power imbalances in health care and actively dismantle them through client interactions ( 24). This model of midwifery has been described as taking a relational approach to the patient-caregiver relationship ( 8, 9, 20). This relational approach seeks to diminish the hierarchal boundaries between patient and caregiver and actively empower women to enable them to make meaningful choices ( 8, 9, 21). Part of addressing power imbalances is to recognize women as consumers of health care. Thus, Canadian midwifery prefers the term ‘client’ over ‘patient’ ( 9). This recognizes that the client has choices both within health care and the care providers they seek. In addition, the term ‘patient’ has been problematized in feminist bioethics as being synonymous with compliance and ‘patience’, particularly with respect to women’s health-where the locus of control remains with the health care provider ( 24). While informed choice offers patients a range of choices regarding treatment options, in most settings these options are based on what is presented by the caregiver and their own inherent bias ( 3, 10). When patients refuse recommendations, they are seen as going against medical advice, thereby setting up an opposing relationship between patient and caregiver ( 10, 20). With an emphasis on promoting autonomy, integral to the midwifery concept of informed choice, patients are equally supported to consent to available options or decline all options presented by caregivers. Within this framework, declining recommendations is not simply ‘allowed’ but is recognized as a valid and supported option. Recognizing that information sharing alone is not sufficient to fully support autonomy, midwifery in Canada incorporates feminist bioethics principles into its model ( 20). To this end, the Canadian model of midwifery includes informed choice as a central tenet of care and an obligation of all midwives in the provision of care ( 25). The Association of Ontario Midwives defines informed choice as, “an exchange of relevant information between client and health care provider, which allows for decision making by the client that is informed, reasoned, and uncoerced. It is a process that leads to the act of informed consent to treatment/procedures/tests or to a choice of refusing treatment/procedures/tests. Autonomy, responsibility, and accountability are the three bases of informed choice” ( 26). Following this definition, ideally, the principle of informed choice supports a patient-centered ideology of health care, in which the caregiver facilitates a non-authoritarian exchange of information which empowers the patient to function as the primary decision maker ( 8, 26). Integral to the concept of informed choice is both the nature of information shared and the way in which it is provided. Information should be shared and exchanged in a ‘non-urgent, non-authoritarian, cooperative manner’. In this sense is intended to be a process as well as an outcome: a process that both depends on and develops a relationship of mutual trust and respect between the patient and caregiver, and an outcome which results in the patient making the appropriate choices for their health ( 8, 26). In addition, the inclusion of the patient as an active participant in healthcare moves beyond the earlier and more paternalistic notion of informed consent or informed choice.