Whether surrogate decisionmakers have the authority to refuse pain and symptom management measures on behalf of incapacitated patients is a particularly timely question to ask in this era of growing commitment to ensuring appropriate pain and symptom management measures for all patients.

Evidence of the current trend toward aggressive pain and symptom management is abundant: Clinicians are told that pain is the fifth vital sign. Accrediting bodies are insisting that pain-management standards be met. Palliative care units and services are opening in hospitals across the country. Palliative care certification programs are inundated with inquiries of interest. One of the unspoken assumptions behind these developments is that all patients want their pain to be carefully assessed and maximally addressed and that we need to work harder to respond to this pressing need. So, when we confront a patient or surrogate decisionmaker who is disinclined to accept the state-of-the-art pain and symptom management techniques, it can give us pause.

It is far too easy to mistakenly assume in our clinical practices and policies that all patients desire whatever state-of-the-art pain and symptom management techniques we have to offer. But in point of fact, as Paul Hofmann so astutely notes, the desire for aggressive pain and symptom management is far from universal. There may well be patients who have a different relationship toward pain and suffering. They are patients for whom pain is not the thing to be most avoided, for whom there are worse things than being in pain, or for whom suffering may hold particular meaning and/or the promise of redemption. Although they may be in the minority, they are patients who remind us that, on a fundamental level, whether it is appropriate to treat pain and symptoms is ultimately an open question that turns inevitably on one's values, goals, and perspective. There are certainly patients who want nothing more than to be kept out of pain, and for these patients, bringing the best of what pain management has to offer is certainly appropriate. Yet there are other patients who, if given the choice of remaining conscious, alert, and present in the dying process or being sedated and pain free, would clearly choose the former.

Is one choice better or worse than the other, more or less right? We would be hard pressed to make that case. Let us consider, for example, a dying Buddhist patient who consistently said that her goal was to remain as alert as possible, despite her pain. If she reported that the pain meds made her thought process cloudy and interfered with her ability to engage thoughtfully with her children in her final hours, would we medicate her against her will? Certainly not. As long as she was making a fully informed choice and had the capacity to do so, one would hope that we would honor her wishes and not impose treatment on her to facilitate our own comfort.

Why then would we consider overriding the same refusal of medications made by her surrogate decisionmaker on her behalf once she became incapacitated? Part of the confusion at the heart of this question stems from a confusion about what surrogate decisionmakers are doing when they make decisions on behalf of incapacitated patients. In their capacity as surrogates, such individuals are bound to make decisions based first on their knowledge of the patient's wishes, values, goals, and priorities. We call this substituted judgment. They are substituting their voice for the patient's, or more literally, they are using their voice to give voice to the patient who can no longer speak for himself. Only if nothing is known about the patient's preferences are surrogate decisionmakers to make a decision based on what they think would be best for the patient. We call this best interest. But even in a best-interest context, the surrogate is still bound to take into account the kind of person the patient was, weighing the potential benefits and burdens of potential treatments from the perspective of the patient.

There might be reason to probe a little further with a surrogate decisionmaker who is refusing pain medications on behalf of a patient. We would want to be clear why she thought the patient would refuse pain medications, or why it would be best for the patient to not be medicated. We would certainly want to have protections in place to assure that the patient was being well cared for and well thought of. But we shouldn't reject out of hand the request of a surrogate decisionmaker to forgo pain medications just by virtue of his standing as a surrogate. In other words, unless there are exceptional circumstances, the surrogate should be presumed to have the same rights and authorities that the patient would have if the patient had decisionmaking capacity. Refusal of pain medications should be considered the same as refusal of any other medications.

What, then, can a treating team do if confronted with this kind of treatment refusal? Paul Hofmann asks whether we can really just close the door to a patient crying out in pain. Surely, that is not the only option. It is necessary to understand that what we have to offer in pain and symptom management is not all or nothing; the choice to be made is not an either/or proposition—that is, either we give you meds and are therefore present and supportive, or we essentially abandon you and leave you moaning behind closed doors. There are numerous other ways that we can and should remain present with patients while still honoring their rights to refuse medications. We can sit quietly at their side, stroke their skin, play soft music, breathe deeply with them, keep the lights low. Most of all, we can ask them what they need us to do and what would be helpful to them. Too often, care providers abandon patients who make treatment choices that are difficult to understand or choices with which they disagree. The abandonment can be as overt as discharging a patient from one's practice or as subtle as closing the door or failing to round as regularly on the patient. Tending to our own feelings about the patient's choices is one way to ensure that one can be more genuinely present, no matter what the patient decides.

Sometimes, though, a patient or surrogate might make a decision to forgo pain medications that not only would we not choose for ourselves but that makes us acutely uncomfortable or that we think is wrong. Institutions need to create opportunities for such stark differences of opinions to be voiced, taken account of, and discussed. In my practice as an ethicist, I always encourage the establishment of mechanisms to get such conversations going within the team and between the team and the patient or surrogate and other involved parties. Often, concerns surface in the regular ethics rounds I conduct. Care conferences can be another good way of facilitating conversation between the stakeholders. In the event that a disagreement persists, I am a strong proponent of ethics consultation (see Paul Hofmann's reference to The Ethics Practice template policy text on “Consultation in the Event of a Disagreement”).

Whatever the level of concern, when it comes to responding to the surrogate decisionmaker who is refusing pain medications on behalf of the incapacitated patient, we need to remember that our ideas about pain and suffering, even our ideas about what makes for a good or bad death, are fundamentally influenced by our values, goals, and priorities. Our growing presumption in favor of pain relief, although wholly appropriate for most patients, needs to be tempered with the recognition that relief from pain is neither the only goal nor a universal goal.