The Limits of Surrogates’ Moral Authority and Physician Professionalism: Can the Paradigm of Palliative Sedation Be Instructive?

Authors

  • Jeffrey T. Berger


Abstract

With narrow exception, physicians’ treatment of incapacitated patients requires the consent of health surrogates. Although the decision-making authority of surrogates is appropriately broad, their moral authority is not without limits. Discerning these bounds is particularly germane to ethically complex treatments and has important implications for the welfare of patients, for the professional integrity of clinicians, and, in fact, for the welfare of surrogates. Palliative sedation is one such complex treatment; as such, it provides a valuable model for analyzing the scope of surrogates’ moral authority. Guidelines for palliative sedation that present it as a “last-resort” treatment for severe and intractable suffering yet require surrogate consent in order to offer it are ethically untenable, precisely because the moral limits of surrogate authority have not been considered.

Article

It is impossible to declare that patients have a core interest in being free of suffering, that palliative sedation is sometimes necessary to relieve suffering, and that if the patient has lost decision-making capacity, then palliative sedation can be administered only with the consent of the surrogate. The clash of these demands highlights the vagueness and confusion around surrogates’ moral authority.

With narrow exception, physicians’ treatment of incapacitated patients requires the consent of health surrogates. Although the decision-making authority of surrogates is appropriately broad, their moral authority is not without limits. Discerning these bounds is particularly germane to ethically complex treatments and has important implications for the welfare of patients, for the professional integrity of clinicians, and, in fact, for the welfare of surrogates. Palliative sedation is one such complex treatment; as such, it provides a valuable model for analyzing the scope of surrogates’ moral authority. This analysis can, in turn, improve the use of palliative sedation.

Palliative sedation is the pharmacologically induced lowering of consciousness for the purpose of managing otherwise uncontrollable symptoms. Use of this intervention may preclude the patient's ability to report symptom severity and to communicate a desire to discontinue sedation once it has been initiated. Additionally, palliative sedation has the potential to shorten survival, irrespective of the underlying disease process, when used under certain conditions. For these and other reasons, it is an ethically complex intervention. A review of guidelines on palliative sedation finds similar positions on several key considerations.[1] Authoritative statements are in consensus that it should be reserved for patients near the end of life whose symptoms are severe and intolerable. Additionally, symptoms must be refractory to intensive palliative efforts provided by a multidisciplinary health care team.[2] Under these conditions, most patients who qualify for palliative sedation are within days of death, and many have irreversibly lost decision-making capacity.[3] A plurality of guidelines in the United States and elsewhere also maintain that surrogate consent is required to use palliative sedation for incapacitated patients.[4]

One particularly difficult issue for palliative sedation is whether surrogates have a right to reject it when it is a “treatment of last resort” for severe and intractable suffering. Are physicians, bound by their duties to the patient, ethically obligated to reject such refusal? What are the ethics of surrogacy involving patients with severe symptoms? More fundamentally, what are the limits of the moral authority of the surrogate? The literature, including widely cited ethics resources, is inattentive to this issue,[5] with few exceptions.[6]

Surrogacy in the Contemporary Context

The patient-physician dynamic has been reshaped over the last decades by the rapid evolution in legal and sociocultural norms attributable, in part, to developments in civil, women's, and consumer rights.[7] During this time, patients raised their expectations for health information and for participation in decision-making. The eminent physician-philosopher Edmund Pellegrino noted that these changes have “made [the doctor-patient relationship] more open, more adult, more transparent, and more attentive to the patient's values and wishes” and have diminished “physician arrogance and self-assurance.”[8] He also observed that these phenomena have been “accompanied by trends that are dangerous to the patient” (p. 19).

Physician uncertainty in exercising due medical authority is one of the factors that complicate the care of incapacitated patients.[9] For example, some physicians are reluctant to provide surrogates with explicit counsel about treatments even when so desired,[10] and some present disproportionately harmful medical interventions as neutral options.[11] Perhaps furthering this trend, many resident physicians, invoking a misguided deference to patient autonomy, are unwilling to recommend against predictably ineffective attempts at cardiopulmonary resuscitation.[12] These behaviors compound the challenges inherent to the role of surrogate[13] and undermine surrogates’ ability to serve capably as advocates. These behaviors also have implications for the promotion of medical professionalism.[14]

Furthermore, surrogacy is far more complex than is suggested by its normative ethical construction. [15] The decisions surrogates make are sometimes influenced by a variety of non-patient-centric considerations, such as their own emotions, including anticipatory grief, and the depth of their coping capabilities and resources. These decisions are also affected by the quality of the clinical information, professional support, and medical counsel that surrogates receive.[16] The struggles of surrogacy combined with physician uncertainty negatively affect patients, have psychological sequelae for surrogates, and fuel clinicians’ moral distress.[17] A careful examination of the limits of surrogates’ moral authority is thus necessary.

Surrogates’ Moral Authority

The ethical foundations of surrogacy include patients’ trust in their intimates and mutually held concerns of welfare and well-being.[18] Although many patients wish to extend to their surrogates some discretion in decision-making, this latitude is often intended to permit surrogates to diverge from patients’ previously stated preferences for aggressive care in order to attend to the patients’ experiential interests, particularly near life's end.[19]

The moral authority of surrogates cannot be boundless because the basis of surrogacy is conceptually delineated and its ethical praxis is shaped by considered discretion around patients’ essential interests. A surrogate acts beyond his or her moral license, I argue, when he or she subjugates the patient's core interests to interests that are either not shared by the patient at all or are shared by the surrogate and patient but are not among the patient's core interests. An example of the former is a decision that adheres to religious tenets to which the patient does not ascribe. The latter might be exemplified by a son's decision to defer the withdrawal of mechanical ventilation until the patient's grandchild has completed final exams.

A core interest of patients is to be free of distressing physical symptoms. This interest raises a serious challenge to surrogates’ decisions against the relief of suffering. Even though some patients may derive existential gain through suffering, the ability of cognitively incapacitated patients to derive meaning from physical distress is limited or absent. Therefore, justifying a substituted judgment for the nontreatment of evidently severe symptoms on existential gains is, at best, highly problematic. Plans to withhold symptom relief predicated on patients’ advance directives are similarly problematic. Preconditions for such a directive to be considered ethically actionable are that the patient's intent and reasoning are well understood and the specific conditions under which the directive should and should not apply are known, although some writers support a more direct implementation of these directives.[20] These requirements are warranted because the request is so unusual and potentially harmful that, on its face, it calls into question the personal and medical foundations for the preference. Moreover, narrative directives have many serious, well-documented limitations.[21] Indeed, none of the established ethical standards for surrogate decisions—namely, known wishes, substituted judgments, and patients’ bests interests—provide firm footing for the nontreatment of severe and refractory symptoms in incapacitated patients. For these reasons, the consensus requirement for surrogate consent in palliative sedation is unsustainable.

Surrogates’ role in palliative sedation is also overstated by the National Hospice and Palliative Care Organization in its statement on palliative sedation. The NHPCO predicates the use of palliative sedation on surrogates’ determination that the criterion of symptom intolerability has been satisfied.[22] Notwithstanding the extraordinary aptitude of some intimate surrogates at detecting signs of distress, determining symptom intolerability is an altogether different task. The point at which a noncommunicative patient's symptoms shift from troubling to intolerable cannot be known because intolerability is an experience that is particular to the patient. Therefore, empowering third parties, whether surrogates or clinicians, to make tolerability assessments is clinically difficult, and predicating the use of palliative sedation on these determinations is ethically problematic. The criterion of determining the intolerability threshold by proxy should be jettisoned. Instead, care of the patient should be guided by a collaborative assessment by the lay and medical caregivers of the patient's signs of distress.

Guidelines for palliative sedation that require both a “last-resort” circumstance and surrogate consent are ethically untenable precisely because the moral limits of surrogate authority have not been considered. Since the ethics of surrogacy does not support surrogates’ moral authority to withhold palliative measures for patients’ severe and refractory symptoms, surrogate consent cannot be an ethical requirement for palliative sedation. Physicians’ independent and fundamental moral and professional obligation to the patient to relieve suffering is sufficient ethical license to administer palliative sedation within the consensus criteria for its use. Moreover, physicians’ professional obligations to patients who meet these criteria compel them to prescribe palliative sedation, although physicians do not necessarily exercise this judgment.[23]

Challenges to surrogate consent notwithstanding, physicians remain obligated to surrogates because these individuals continue to have important standing in the patients’ care. Physicians are obligated to vigorously seek surrogates’ assent to palliative sedation for several reasons. First, physicians have some duty to respond to their patients’ important health-related concerns, which includes patients’ concerns for their surrogates’ distress. Second, to the extent that the patient and family are recognized as together forming a unit of care, physicians should directly mitigate surrogates’ distress and demonstrate respect for family integrity and fealty. Third, physicians should endeavor to maintain and strengthen therapeutic relationships with surrogates, at least for pragmatic reasons, because the quality of these relationships affect patient care and welfare.

In sum, the limits of surrogates’ moral authority have not been well defined, and the interface between these limits and physicians’ obligations directly to patients is similarly unclear. This lack of accounting leaves physicians unsure and patients vulnerable in the face of surrogates who act at and beyond the limits of their moral authority. Efforts to better account for and to describe the ethical boundaries of surrogate authority are necessary to promote good patient care and to facilitate identifying surrogates who falter in their role. Palliative sedation as a last-resort measure should be understood to be beyond the moral authority of surrogate refusal. Surrogate consent should not be a requirement of its use in policy and in practice; surrogate assent for palliative sedation should be pursued in concert with the provision of counsel and the offering of comprehensive support.

Ancillary