2. Pitfalls of the Category 4 Approach
2.1. A Case
Mrs. P was a 77-year-old female who had experienced a difficult medical course in recent months, including complications from chronic kidney disease, COVID pneumonia, dementia, meningioma, and a middle cerebral artery aneurysm. She was admitted to the hospital from her nursing home with an altered mental status, acute kidney injury, and abnormal labs following five days of refusing to eat or take medications, and she was repeatedly stating that she “just wants to die”. The patient was likely to survive to discharge with regular dialysis, medication, nutrition, and hydration. However, Mrs. P strongly refused any treatment, stating “I don’t want to be tied up here any longer; I don’t want any more procedures or tubes in me. I just want to go home”. The attending physician and a consulting psychiatrist determined that Mrs. P lacked DMC because she was not able to demonstrate a sufficient understanding of her treatment options or to reason. In their conclusion, the authors stated: “One goal of this paper was to provide a philosophical defense of real-world practices that are inconsistent with standard guidance, but which seem to be through the risks and benefits of those treatment options”. Following generally accepted views about the sliding-scale nature of DMC, they required Mrs. P’s capacities to reach a high threshold to determine that she possessed DMC, since she would likely die if she were allowed to refuse treatment. The attending physician stated that the patient clearly lacked DMC because her refusal would lead to her death, and because “she can’t even tell me the reason for the Quinton catheter in her chest”. The patient’s daughter was acting as the surrogate decision maker because Mrs. P had no partner or other children. The daughter was often present at the hospital and demonstrated consistent concern for Mrs. P’s wellbeing and a good understanding of the recommendations that physicians made about her mother’s care. Mrs. P’s daughter consented to all medications., p. 2.
“Some patients can make informed decisions to refuse possible medical interventions if they have an overriding objection to the burdens of those interventions, even if they are not capable of more complex comparative judgments regarding the nature and potential risks and benefits of the interventions they refuse. Such patients object to at least one burden associated with each of the proposed interventions, and they object to this burden so strongly that no reasonably foreseeable benefits of potential interventions could compensate for such a burden. That is, these patients recognize some overriding side constraints on their treatment decisions”., p. 3.
“A second novel kind of DMC for refusal involves patients who are committed to the goal of non-treatment or to other goals that are inconsistent with possible medical interventions (e.g., going home). Some patients, for example, may want their disease to follow its natural progression. They may accept comfort measures, but they do not want to further prolong the course of their disease; they may have the goal of dying, or at least of no longer treating the disease. Importantly, a patient can make a goals-based refusal decision without understanding the details of their diagnosis and the nature and probable outcomes of possible treatments. It is enough that they know that they are being presented with possible medical interventions that interfere with their overriding goal”. (pp. 4–5).
2.2. What Is the Dominant Version of Decision-Making Capacity
2.2.1. Burden-Based Refusal
“They (Patients) do not need to know what the nature, benefits, and risks of various proposed surgeries are, or how a PEG tube differs from a nasogastric or jejunostomy tube, in order for them to have the capacity to make informed refusals of these options”., p. 3.
“It appears as if [there is a] good indication that there may be overriding burdens associated with possible interventions that she rejects”., p. 4.
2.2.2. Goals-Based Refusal
“Importantly, a patient can make a goals-based refusal decision without understanding the details of their diagnosis and the nature and probable outcomes of possible treatments. It is enough that they know that they are being presented with possible medical interventions that interfere with their overriding goal”., p. 5.
“The healthcare team should attempt to confirm that Mrs. P has consistently identified an overriding goal as the reason for her refusal, that her refusal is not the result of a delusion or mental illness, that she is not being coerced by others, that she understands (in a general sense) the gravity of the consequences that could result from her refusal”., p. 4.
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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