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The Patient as Agent of Health and Health Care - Autonomy in Patient-Centered Care for Chronic Conditions (Hardcover)
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The Patient as Agent of Health and Health Care - Autonomy in Patient-Centered Care for Chronic Conditions (Hardcover)
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Patient-centered care for chronic illness is founded upon the
informed and activated patient, but we are not clear what this
means. We must understand patients as subjects who know things and
as agents who do things. Bioethics has urged us to respect patient
autonomy, but it has understood this autonomy narrowly in terms of
informed consent for treatment choice. In chronic illness care, the
ethical and clinical challenge is to not just respect, but to
promote patient autonomy, understood broadly as the patients'
overall agency or capacity for action. The primary barrier to
patient action in chronic illness is not clinicians dictating
treatment choice, but clinicians dictating the nature of the
clinical problem. The patient's perspective on clinical problems is
now often added to the objective-disease perspective of clinicians
as health-related quality of life (HRQL). But HRQL is merely a
hybrid transitional concept between disease-focused and
health-focused goals for clinical care. Truly patient-centered care
requires a sense of patient-centered health that is perceived by
the patient and defined in terms of the patient's vital goals.
Patient action is an essential means to this patient-centered
health, as well as an essential component of this health. This
action is not extrinsically motivated adherence, but intrinsically
motivated striving for vital goals. Modern pathophysiological
medicine has trouble understanding both patient action and health.
The self-moving and self-healing capacities of patients can be
understood only if we understand their roots in the biological
autonomy of organisms. Taking the patient as the primary perceiver
and producer of health has the following policy implications: 1]
Care will become patient-centered only when the patient is the
primary customer of care. 2] Professional health services are not
the principal source of population health, and may lead to
clinical, social and cultural iatrogenic injury. 3] Social justice
demands equity in health capability more than equal access to
health services.
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