Person-centered care places people in charge of their medical decisions as well as their long-term healthcare plans. Person-centered care should reflect people’s healthcare priorities and values. Centering healthcare around people receiving care rather than projecting only the goals of the practitioners calls for a framework beyond principlism. A dignity-based framework adds ethical heft to principles in the realm of clinical care. Drawing on interpretive sociology, a framework should include the meaning people attach to their world, whether that meaning comes from social or cultural phenomena or personal priorities. Then, critical theories can inform public and hospital policy deficiencies.
Autonomy, described as self-direction, remains the crux of person-centered care. Self-direction in medical care is generally legally protected and falls within recognized rights.
However, physician or hospital duress and court-compelled care provide challenges to self-direction.
Informed consent and informed refusal are precursors to autonomous decision making in health care. Yet the cloaked language surrounding autonomy or beneficence can imply that a doctor or clinician is giving a person “permission” or “allowing them” to be the decision maker. Really, there is an established presumption that people decide for themselves, which should be respected by doctors.
Attention to defining beneficence more broadly calls for a new term, person-centered beneficence. Person-centered beneficence (a term I made up) could help guide a dignity-based analysis and avoid paternalism cloaked as beneficence. Person-centered beneficence addresses who defines a good outcome (success) and who decides what to tolerate on the road to potential success. Under the dignity-based framework, doctors should look to maintaining the patient’s sense of self, respecting their privacy, listening to their concerns, and understanding their healthcare values.
Evaluating considerations as beneficent recognizes the good in each of those four propositions. That alleviates autonomy from its large role of acting as a counterweight to paternalistic beneficence. Folding in decision making as a moral good, recognizing its moral value allows doctors (and even courts) to see that beneficence may be at the discretion of the autonomous decision maker, even subjective and not always only something objective. Beneficence cannot allow forcing the treatment the doctor finds medically best. Beneficence as an ethical term has to do with moral goodness. We ask good for whom? Good in what way? And good among what other competing goods (better for whom, better in what way)?
In person-centered care, if an older adult refuses intrusive care, a dignity-based framework with person-centered beneficence would consider the stakeholders and weigh the importance of their concerns (the patient would bear the intrusion and live with the side effects; the doctor feels the treatment is worthwhile and would lead to the best medical outcome). The person’s viewpoint on quality of life and on medicalization would be prominent. Dignity includes many facets and informs a framework which considers the big picture issues of how we as a society should recognize an underlying tendency to push life at all costs — that societal tendency should be separated from individual refusals. While sometimes a state interest in continued life is relevant (as decided by a court), usually adults can direct their own care based on their personal views.
Dignity might also rightly limit the social work role in evaluating why people refuse care. For example, many people think refusing care due to cost is wrong. Yet for a family trying to save to send children to college, an adult refusing care that would cost them both in lost earnings and their savings is reasonable.
The problem would be better addressed legislatively than clinically. The right to refuse even for the wrong reasons is essentially protected by law. The ability to access care when you are socioeconomically disadvantaged is a justice issue incorporated into a dignity framework (an inability to access care is an indignity). A dignity-based framework has room to consider the public policies surrounding how care is accessed so that the financially disadvantaged are not forced to refuse care or to accept a charitable donation or create a go-fund-me page.
The stakeholder that matters most is the person whose care is in question. A doctor’s stake and the state’s stake must be kept in perspective and evaluated in the context of the burden of potential outcomes.
The use of capacity assessments also plays a role in limiting a person’s ability to direct their own care.
Things to Consider
Note: In refusals, sometimes legal issues govern. Considerations include applicable statutes limiting the right to refuse (e.g. Baby Doe laws), whether the statute is constitutional, and who decides (ethics committees cannot trump courts; mediation is a possibility and mediators must be impartial.) Nothing on this website provides legal advice.
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(Criticism of Linda Barclay’s Dignitarian Medical Ethics. “First, it is not obvious that failing to treat someone as a social equal is incompatible with respecting her dignity. Second, it is not always clear what treating someone as a social equal amounts to in practice.”)
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For your convenience, see slides as PDF: Dignity Framework & Patient-Centered Care