Abstract
This article is an empirical work on decision-making processes in the case of persons with chronic illnesses in the COVID19 pandemic context, regarding their medical care and self-care. Medical decisions are processes that guide the production of a health diagnosis or treatment, using the available information, where the patients’ preferences are often incorporated. This article tackles the impact of the pandemic on chronically ill patients’ medical decisions when the care system has been significantly altered by it. Considering that health decisions are importantly embedded in social and economic conditions, the pandemic affects a precarious care system and constrains individual possibilities. Chile has a weak support infrastructure for caregivers and a health care system that promotes private health and a low-quality public health system. Hence, the pandemic is an adverse context for chronically ill patients and it alters the conditions in which medical decisions are taken. We performed 10 interviews with chronically ill patients who took responsibility for their own health decisions: five patients diagnosed with common chronic diseases and five patients diagnosed with rare chronic diseases. After Reflexive Thematic Analysis, the results show that the Chilean health system is extremely precarious and that not many alternatives are or have been offered to chronically ill patients in the COVID19 context.
Highlights
Care decisions in health are a sensitive topic in people who live with a chronic illness
Where do decisions start and where do they end? Where does the decision reside? Is it in the clinician’s authority or in the patient’s obedience? Is it in the accessibility of a drug or treatment or the pharmaceutical market? We introduce the idea of sociomedical networks to interrogate the idea that medical decision-making is better understood from a theory of assemblages, than from theories of rational choice
Which assemblies have to occur for an individual to have options to decide? Who has the ability—and where and when—to make a choice regarding their medical care? In opposition to categorical properties, dispositions need relationships and networks to manifest their expressions
Summary
Care decisions in health are a sensitive topic in people who live with a chronic illness. Most knowledge about care decisions in chronic illnesses comes from one-time decision-making research, which ignores the burden of having to make choices every day (Paterson et al, 2001). These decisions involve different aspects around health regarding self-care and medical care, creating the necessity to recognize the different realms involved in the decision-making process. The way a medical decision is made has changed over the years; the emergence of the concept of “consumer in health,” feminist movements, and the dispute over the authority of medical doctors over patients’ bodies, or public policies in different countries which focus on patients’ rights (Charles et al, 1999) clearly show that medical decision-making is a health problem, and a social phenomenon or, at least, a socially informed
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