Death or dialysis: the value of burdensome life-extending treatments for the cognitively impaired

All medical treatments carry with them some level of burden for the patient, though this is usually outweighed by the benefits. Some long-term, life-extending treatments, however, are highly burdensome and the benefits are not always clearly greater. When a patient lacks decision-making capacity, there is a risk of undue harm if the decision is made on their behalf to initiate that treatment. In this chapter, I question the prioritisation of life-extension over quality of life in such circumstances, arguing that the latter ought sometimes to be prioritised. I suggest that in appealing to the principle of equal treatment of the cognitively impaired (which is endorsed in the majority of countries and is often the very purpose of legislation which governs treatment decisions for this population) we ought to accept that the very fact some patients with decision-making capacity choose to forego a medical intervention entails that sometimes cognitively impaired patients in similar situations ought also to forego that medical intervention. In doing so, maintenance dialysis is employed as a case study. Kidney failure is a reality for millions of individuals globally. Due to the shortage of organs for transplantation, patients with or approaching kidney failure are usually started on maintenance dialysis. This is often considered the default, with the alternative of conservative kidney management – which, incidentally, some studies have suggested may provide a similar survival benefit in some patients – thought of as giving up. Dialysis is a hugely burdensome treatment, often proving both physically and mentally exhausting and thereby negatively impacting on quality of life. Depending on treatment modality it may also require thrice weekly visits to an outpatient unit for the procedure to be performed. With the increasing age of the dialysis population, for patients to have several comorbidities is common and may compromise quality of life further. Given the significance of these burdens, it is not uncommon for patients – particularly those who are older and with several comorbidities – to forego dialysis in favour of conservative kidney management. Many of the burdens associated with dialysis may be exacerbated in cognitively impaired patients; they may not understand why they are being put through the treatment, and dialysis clinics may not be suitable environments depending on the nature of the patient's impairment. Not only are the burdens high for cognitively impaired patients, but these patients may be subjected to them for an extended period of time. The organ shortage, as well as many older cognitively impaired patients not being suitable candidates for transplantation, mean that dialysis is not always a bridge therapy. Rather, it is something that will be a part of the rest of these patients’ lives. This raises the question of dialysis withdrawal, which I frame in terms of the equivalence thesis and the possible omission bias of clinicians. I conclude that given some patients choose themselves to forego dialysis, patients who lack decision-making capacity ought sometimes also to forego dialysis in favour of conservative kidney management. This discussion is applicable to other highly burdensome treatments for cognitively impaired patients, and indeed is also useful in considering decisions concerning dialysis more broadly. Nonetheless, I also call for further research in this area to better explore the issues raised.