DECISION-MAKING IN PERSONS WITH END STAGE KIDNEY DISEASE

When a patient with End Stage Kidney Disease (ESKD) refuses a life-saving intervention such as dialysis, the consequences are dire because death ensues quickly without dialysis or a kidney transplant to replace kidney function. Therefore, autonomous decision-making is critical; however, in persons affected by kidney failure-induced neuropathy or associated psychological and neurological disorders like depression and anxiety, decision-making becomes more complicated. 

This paper analyzed the ethical considerations surrounding decision-making capacity and interrogated the complexity of accepting a person's decision to say no to a life-saving treatment, specifically in the presence of comorbidities such as kidney failure-induced neuropathy (uremia) and associated depression and anxiety. 

Ethical analysis showed that respect for autonomy is at risk when the determination of capacity is ambiguous in a patient with depression or neuropathy from ESKD-induced uremia. Furthermore, saying "no" to dialysis creates conflict between individual autonomy and physicians' duty to do no harm. Nonmalficience can conflict with beneficence (doing good) and justice when ethical tensions arise between the perceived benefit (dialysis), which the patient may not share, and when the overall distribution of benefit versus the burden is inequitable. Furthermore, the right to refuse treatment (informed refusal) should override the clinical team's preference as long as the adult person has adequate decision-making capacity. The deontological argument associated with physician duties may lead to paternalistic practices that directly conflict with patient autonomy and may lead to unintended psychological harm, for example, when a patient is coerced or manipulated to accept dialysis despite the person's contrary wishes. Moreover, the Kantian theory, which supports the deontological and nonconsequential arguments, deemphasizes the values and beliefs of patients and instead focuses on generalized obligations, which undoubtedly are of value in widespread emergencies but problematic in personal life decisions such as life-long dialysis. On the other hand, the utilitarian theory focuses on the consequentialist argument of –the greatest good for the greatest number and highlights welfarism, aggregation, and impartiality. This argument is helpful in public health measures but can create inequitable kidney health outcomes. For example, dialysis, offered to most patients, is not necessarily the best treatment, while kidney transplantation, arguably the best treatment, is unfairly distributed among the fewest patients. Furthermore, rights theory protects life, liberty, expression, and property; therefore, neuro-rights and biopower may conflict. Ultimately, this ethical analysis generates provocative questions: a) who has the right to determine another's capacity? b) whose capacity is more relevant? c) whose definition of capacity are we using? d) whose decision-making capacity is being discounted, overridden, and misinterpreted? 

This ethical analysis of decision-making capacity in persons living with ESKD is meant to stimulate further discussion and highlight the complexity of ethics in secondary neurological pathologies as can occur in ESKD and the need for a pluralistic ethical approach.