AMA Journal of Ethics^®

Case

Mr. Abbot was taken to the local hospital from the nursing home where he had lived since his dementia became too severe for him to be unsupervised for any length of time. At 70, his health had been good, enabling him to enjoy the amenities of the nursing facility, stroll on the grounds, participate in art and music therapy, and visit with family and pets on a weekly basis. He was admitted to the hospital with a diagnosis of pneumonia and was in respiratory distress, which was likely to require intubation.

Years prior, before losing decision-making capacity, Mr. Abbot had documented in his advance directive that if he ever became demented and was unable to recognize his family or friends, he would prefer that no attempts be made to resuscitate him, should it ever be necessary. Mr. Abbot’s family, which included three children, made no effort to hide this directive, which was in his medical record, but insisted that it should not be acted upon. The children explained to the doctor that, despite his compromised cognition, their father was currently enjoying his day-to-day life in the nursing home, and should be intubated.

Commentary 1

When patients cannot make their own decisions it is often difficult to know how to proceed. One approach, described by Allan Buchanan and Dan Brock in their book, Deciding For Others, is to employ a hierarchy of principles [1]. First and foremost, decision makers should consider any directives the patient articulated when competent. The second-line approach is substituted judgment, wherein those who know the patient best carry out the course they think the patient would have chosen were he competent. If these options cannot be employed, decision makers may act on what they believe is in the patient’s best interest. This hierarchical approach has been highly influential in medical ethics, but it has limitations that are visible in the case provided. These shortcomings are the focus of this commentary, which aims to discern how applicable Buchanan and Brock’s paradigm is to this and similar situations involving patients who are no longer competent.

Advance Directives

Respect for patient autonomy is often the dominant principle in medical ethics and, according to some, in all of medicine [2, 3]. Arguably, following advance directives provides the best means of respecting the patient’s wishes and preserving autonomy when the patient no longer has decision-making capacity. Most patients (76.5 percent in one survey) expect their wishes to be carried out in the event that they cannot make decisions for themselves [4]. Therefore, few would disagree that advance directives have a strong prima facie weight—overlooking them requires serious justification.

Even if all parties agree with using advance directives to respect patient autonomy, many decision makers still face difficult questions about what interventions and situations are covered by the directive. In the present case, Mr. Abbot said he would not want resuscitation but did not specify what forms of resuscitation he would not want. Fluid resuscitation is rather benign; chest compressions are not, and intubation may not even count as resuscitation—many hospitals separate “do not resuscitate” (DNR) from “do not intubate” (DNI) when specifying goals of care.

Alzheimer’s dementia affects persons gradually, allowing for good days and bad days. Would Mr. Abbot’s advance directive take effect on the first “bad” day on which he did not recognize a family member, or did he intend to wait until he no longer had good days? Difficulties in discerning a patient’s intended meaning limit the usefulness of advance directives.

Moreover, a strict application of an advance directive may not reflect the patient’s autonomous choice in its entirety. Patients often harbor misunderstandings about the interventions they are choosing or rejecting and even the implications of having advance directives [5]. Physicians, too, may misinterpret the patient’s wishes. A case report described one nursing-home resident who was said to be DNR, based on in his living will, but after developing a gastrointestinal bleed and being taken to the hospital, he told the doctors that he was not DNR, adding, “I know I am an old man, but if the condition is treatable, I would like the chance to be treated” [6].

Patients may also place varying emphasis on their autonomy. In a 2005 study by Thorevska and colleagues, most patients (59 percent) created their living wills in consultation with a family member [5]. Similarly, Mazur and colleagues reported that most patients (62.5 percent) preferred shared decision-making models involving their physicians over solely patient-based approaches (preferred by 15.5 percent) [7]. Those who include others while formulating their advance directives may well want to include others in the implementation of those directives. Thus, strictly applying advance directives may not do justice to all of the patient’s wishes.

Substituted Judgment

The second-line approach, substituted judgment, generally does not overrule advance directives, but may play a role when questions emerge about how to interpret and apply advance directives. In the present case, substituted judgment might be important when considering whether Mr. Abbot’s instructions would have changed had he known the details of his present situation: his happy existence despite Alzheimer’s, the acute course of his pneumonia, and his family’s unified desire for a short-term trial of intubation. Yet, limitations of the substituted judgment principle also emerge when it is applied here.

Because of Mr. Abbot’s medical condition, his true wishes cannot be known, so there is no objective way of determining whether his family’s judgment is a true substitute for his. The family’s decision to override the plain reading of his advance directive suggests that they may be merely substituting their own preferences under the guise of “substituted judgment.” Following the advance directive, however, would leave questions about whether the family gave adequate weight to important details the patient did not anticipate (his happy existence, his medical condition, and his family’s wishes).

Shortcomings of substituted judgment are not limited to the present case, but affect the principle more broadly. In one study, medical students could accurately describe substituted judgment but made important mistakes when applying it; if doctors struggle to apply the principle correctly, surrogates might have even more difficulty [8]. When testing the approach, proxy decision makers using substituted judgment were correct only 70 percent of the time [9]. Moreover, patient preferences change over time, making it difficult to anticipate what a patient will choose. In one study, 10 percent of survey respondents who did not want mechanical ventilation in 1999 had changed their minds 3 years later [10]. On the whole, evidence suggests that substituted judgment can be difficult to understand and apply, making it an unreliable means of preserving patient autonomy.

Best Interest

The last option in Buchanan and Brock’s paradigm, the principle of best interest, likewise has limitations. In the present situation, Mr. Abbot’s best interest is debatable. Generally, patients’ best interest involves having their autonomy respected and their rights of self-determination protected—which would push decision makers in this case toward following the advance directive. Yet it is not in a patient’s best interest to have prior instructions misinterpreted or applied in ways the patient did not intend. Furthermore, many patients would not consider it in their best interest to create conflict for their families. These observations rightly make clinicians cautious about implementing the advance directive under the banner of serving the patient’s best interest.

Another tempting approach, invoking a patient’s medical best interest as grounds for dismissing an advance directive, is problematic when the patient’s future course is unclear. In one study of elderly patients with severe pneumonia, researchers observed a 40 percent mortality rate among those who required intensive care (87 percent of all study patients were intubated). Furthermore, survivors spent 15.6 days on average in the ICU [11]. A cognitively impaired patient might find this experience bewildering and distressing, to the say the least, and might still die in the end. There is also no guarantee that the patient would return to baseline health status following the illness. A study of nursing-home residents with dementia found that, 3 months after a lower respiratory infection, 21 percent had a decline in functional status (33.2 percent were dead, 45.8 percent were alive with no decline) [12]. Overall these odds are not bad; they just might not be good enough to justify violating an advance directive. These data also highlight that, while it is tempting to frame the question as one of choosing life or death for the patient, the real question is whether or not to choose aggressive treatment. Medical uncertainties temper enthusiasm for acting unilaterally on behalf of the patient’s best interest.

Often it is not clear which path best serves a patient’s interest, medical or otherwise, for it is difficult to know which of the patient’s interests should be given priority and at what cost to the other interests. This does not preclude decision makers from discussing the patient’s best interest, but it does suggest that the principle is not a simple or unfailing rule for making complex medical decisions.

Leaving the Principles Aside

Advance directives, substituted judgment, and best interest all have limitations that constrain their usefulness when making medical decisions for patients who cannot choose for themselves. Awareness of these limitations allows us to shift attention to other observations that may provide guidance when patients cannot make their own decisions.

First, when the patient cannot make his own decisions, someone else must make them in his behalf. This point is itself controversial; some believe that surrogates who merely report a patient’s prior wishes are not making genuine decisions [13]. Surrogates at no point abdicate their role as decision makers, since, even when the patient’s wishes have been expressed previously, the surrogates still make crucial interpretive decisions about when and how to implement those stated wishes. In the present case, unless the physician, the state, or some other designated party steps in and decides how to interpret and implement Mr. Abbot’s advance directive, the family retains some latitude in deciding whether his advance directive will apply.

Second, those who make medical decisions for incompetent patients may, and indeed must, consider factors beyond patient autonomy and advance directives. In an era dominated by autonomy, this point is rarely explicitly made but does have some supporters. A recent survey found that many U.S. physicians do not exclusively hold a patient’s expressed wishes as their highest concern when making ethically complex medical decisions [14]. Likewise Jonsen, Siegler, and Winslade advocate that physicians consider all the facts of a case in order to arrive at a more balanced judgment [15]. In this context, the family is permitted to consider factors other than the patient’s advance directive.

Finally, in light of these observations, refusing to implement an advance directive does not necessarily disrespect the patient. This is particularly true when there are questions about the applicability of advance directives or when additional information exists that probably would have influenced the patient’s decision.

In the present case, the family should be allowed to offer the final verdict on whether to intubate Mr. Abbot. The physician can make an extra effort to educate the family about the pros and cons of each possible decision and about current theories in medical ethics, but the physician should not forbid intubation based on the patient’s advance directive. (Incidentally, these arguments also allow room for physicians to challenge patients’ advance directives on occasion. How to resolve physician-family disagreements over patient care is a separate question that warrants its own commentary.) Hierarchical decision-making paradigms such as that offered by Buchanan and Brock may be helpful at times, but when they create more ethical ambiguity than they resolve, it is appropriate to set them aside.