Though we often talk about a patient’s right to be informed about the risks and benefits of treatment options or about prognosis, there is a correlative right not to be so informed (or not to know).
This right has become particularly prevalent in the field of genetics, where patients could come to know that they are at risk for a serious disease for which there is no effective treatment (e.g. Huntington’s disease). Under such circumstances, some patients may decide that they do not want to know their risk and respecting that choice may be both a matter of respecting autonomy and ensuring beneficence.
However, the existence of this right is contested. And even for those who agree that there is such a right, what that right entails is complicated by risk to the patient (e.g. some patients may ask not to know even when there are potentially effective treatments) and by risk to others (e.g. when genetic testing reveals genetic information that would affect family members).
For further reading…
Berkman and Hull (2014). The “Right Not to Know” in the Genomic Era: time to Break From Tradition? Am J Bioeth, 14(3):28-31.
Gilwa et al (2015) Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants. Genetics in Medicine, Nov 2015. https://www.nature.com/gim/journal/vaop/ncurrent/pdf/gim2015149a.pdf
“Paternalism is the interference of a state or an individual with another person, against their will, and defended or motivated by a claim that the person interfered with will be better off or protected from harm. The issue of paternalism arises with respect to restrictions by the law such as anti-drug legislation, the compulsory wearing of seatbelts, and in medical contexts by the withholding of relevant information concerning a patient’s condition by physicians.” (https://plato.stanford.edu/entries/paternalism/)
There is disagreement over classification of paternalism in practice and the ethical justification for it in any given case. One of the classic cases of paternalism that occurred at the birth of bioethics as it is known today is the case of Dax Cowart (see BH website: https://depts.washington.edu/bioethx/tools/ceintro.html). Dax was a patient with severe burns over 65% of his body who was assessed as having decision making capacity and refused care, but care was provided over his objections for the purpose of benefiting Dax (by saving life and restoring significant quality in his life).
“The term beneficence connotes acts of mercy, kindness, and charity. It is suggestive of altruism, love, humanity, and promoting the good of others. In ordinary language, the notion is broad, but it is understood even more broadly in ethical theory to include effectively all forms of action intended to benefit or promote the good of other persons. The language of a principle or rule of beneficence refers to a normative statement of a moral obligation to act for the others’ benefit, helping them to further their important and legitimate interests, often by preventing or removing possible harms. Many dimensions of applied ethics appear to incorporate such appeals to obligatory beneficence, even if only implicitly. For example, when apparel manufacturers are criticized for not having good labor practices in factories, the ultimate goal of the criticisms is usually to obtain better working conditions, wages, and benefits for workers.” (https://plato.stanford.edu/entries/principle-beneficence/)
When thinking about beneficence as a principle in case analysis we are typically considering the consequences, specifically how to bring about the most good and the least harm. One should consider all perspectives (e.g. patient, family, clinicians, community, etc.), and all forms of harms and benefits (e.g. physical, spiritual, social, etc.), and as questions like: Which course of action is likely to produce the greatest benefit (e.g. quantity or quality of life) over harm (e.g. bio-psycho-social pain and suffering) for the patient? For everyone involved?
Adherence = taking your medication in the manner and amount recommended by the clinician.
When patients have trouble adhering to treatment plans, we must stop to consider: what obstacles do they face and why?
We keep asking why because there are a number of reasons why patients and families might have difficulty with a treatment plan and they may not speak up for themselves. This is also why we use the term adherence rather than compliance, as compliance implies one-sided directives in which responsibilities and failures would belong only to patients.
In order to understand obstacles to adherence, think about things like…
- frustration and lack of trust with the medical system (e.g. chronic illness & increasing severity of illness, economic resources, racial bias, etc.)
- accessibility of medical resources (e.g. hospitals, outpatient clinics, Rx’s, etc.)
- time constraints (e.g. work hours, family responsibilities, etc.)
- understanding of the severity of the condition (e.g. denial, hopefulness, etc.)
Treatment plans are not one size fits all and require attentiveness to diversity, equity and inclusion in order for them to be efficacious. They may also require stronger relations, as opposed to punitive rules, in order to achieve desired results.
Adult patients have the moral and legal right to make decisions about their own medical care. Because young children are not able to make complex decisions for themselves, the authority to make medical decisions on behalf of a child usually falls to the child’s parents.
Parents and children have unique vulnerabilities and will often depend significantly on shared decision making processes, though the right to decide ultimately resides with the parents. There are legal exceptions by state that typically revolve around: (1) Child abuse & neglect, (2) sexual abuse, (3) abandonment, or other conditions that sufficiently impinge on the rights of the children.
To have autonomy is to have the ability to ‘self-govern’ or make choices that guide one’s life path.
For instance, if I am coerced (e.g. someone threatens my life) or if I act merely based on what makes me happy in the moment (e.g. eating a whole pint of ice cream), then I have acted heteronomously rather than autonomously. This is because my actions are caused by emotions or things external to me.
A relational understanding of autonomy takes individuals to be constantly situated in historical and social contexts (e.g. socio-economic status, race, gender, ability, etc.). These social components are fundamental to individual identity and comprise a web through which choosing one’s path may be more or less possible, intelligible, and supported.
Whether or not a patient has the capacity to make decisions, healthcare decisions (like all decisions) are typically shared or relational. We depend on others to help us make decisions that are in our best interest. Clinicians play a significant role in this process.