Commentary on Decision-Making at the End of Life

The case of Andrew raises a series of issues related to surrogate decision-making, of which I will address two. The first issue is whether the serial standards of decision-making, namely known wishes, substituted judgements, and best interests, should always be used hierarchically. The second is the complex relationship between family members’ interests in the patient and family members’ self interests, as well as a patient’s interests, self-interests and his or her concerns for family well-being.

In the case of Andrew, several of the principals were troubled by the apparent conflict between the patient’s expressed healthcare preferences and priorities (his wish to remain alert for as long as possible, and to be nursed in his own home with his family) and his experiential interests (his actual physical and psychiatric suffering). This ethical conflict alternatively described in terms of decision-making standards, is a conflict between the patient’s known wishes and best interests. These standards are widely understood to be hierarchical and are often used in this manner (Berger et al., 2008). However, when the standards are implemented in a narrow and rigid manner, an ethically corrupted decision could be produced, resulting in, for example, excessive and unredemptive suffering. This phenomenon is often due to a misapplication of the known wishes standard. Information that ostensibly satisfies the known wishes standard in many situations often, in fact, require contextualisation and interpretation. This case offers a good illustration of this challenge. We know that Andrew wished “… to remain alert for as long as possible and to be nursed in his own home in the bosom of his family”. Was this wish of Andrew’s to remain alert for “as long as possible” equivalent to remaining alert at all costs? If so, did Andrew consider that all costs might include horrific suffering, the amplification of his family members’ stress, particularly that of his young son? Did “alert for as long as possible” also include the pursuit of restoring alertness after it had been lost? If so, in what likelihood of reversibility would Andrew want to subjugate all other important concerns, such as pain, dyspnea, and psychic suffering?

For these reasons, unanalysed adherence to articulated preferences may not be the action that is most respectful of a patient’s authentic preferences. In these situations, a more authentic representation of a patient’s wishes might be found in a substituted judgement, through which concerns that were unarticulated by the patient, or circumstances or consequences unanticipated by the patient, may be integrated into the process of decision-making. Although standards for decision-making for patients without decisional capacity are intended to maximise individual autonomy, it is also important to recognise that many patients do not always prioritise adherence to specific preferences above all other considerations in surrogate decision-making (Fins et al., 2005; Moore et al., 2003). Many patients prefer that their surrogates exercise judgement about decisions, even to the exclusion of their own previously articulated preferences.

A complex area for surrogate decision-making and substituted judgements is the integration of the patient’s concern for family burden among the important concerns of the patient (McPherson et al., 2007). Being a burden on family members is a central concern for many patients. This element within substituted judgements is particularly challenging because surrogates must consider the patient’s concern for the surrogates’ burden while wrestling with their own sense of burden (Berger, 2009; Berger, 2005). For example, what sorts of burden would the patient have assessed as important: physical care-giving burdens, emotional burdens, or financial burdens? Would the patient be willing to forgo treatments (e.g. mechanical ventilation) in order to spare the family prolonged distress? Would the patient be willing to accept treatment that he or she would otherwise assess as offensive (e.g. gastrostomy feeding) to ease the emotional burden of a relative? In the case of Andrew, he would not want to emotionally burden his young son, as his second wife noted. Clearly, this preference should be included among Andrew’s other important concerns as his family attempts to generate a substituted...