Potentially Inappropriate Treatment: Competing Ethical Considerations

Clinical decisions regarding the appropriateness of LSMT primarily weigh a treatment’s potential medical benefits against its potential harms or burdens. Perceptions that a treatment is inappropriate increase as the likelihood and severity of its associated harms or burdens increase compared with the potential benefits. This calculus may be complicated by various factors, such as the patient’s diagnostic or prognostic uncertainty.²  A clinician limiting LSMT against the preferences of a patient or surrogate is relatively rare; however, many would agree that it is appropriate to consider such limitations when the requested treatment’s anticipated medical benefit is reasonably perceived (by the health care team) as minimal and the treatment is likely to impose substantial burdens on the patient. In 1983, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research authored a seminal report that offered a harms-based analysis in evaluating the appropriateness of LSMT for children. The report stated that “…the prolongation of life—and hope against hope—may be enough to lead some parents to want to try a therapy believed by physicians to be futile. As long as this choice does not cause substantial suffering for the child, providers should accept it, although individual health care professionals who find it personally offensive to engage in futile treatment may arrange to withdraw from the case” (emphasis added).^3(pp219-220)  Note that the term futility is now generally reserved only for interventions that are physiologically futile.

The American Academy of Pediatrics employs a similar calculus in its policy on forgoing LSMT. Its policy poses that clinicians may consider LSMT to be potentially inappropriate “when the anticipated benefits of LSMT are minimal and the perceived burden of suffering remains substantial even after exhaustive attempts have been made to palliate pain and other adverse symptoms.”^4(p4)  The American Academy of Pediatrics reserves a narrower threshold for instances when taking action to forgo LSMT against parental wishes may be justifiable, citing “rare circumstances of extreme burden of treatment with no benefit to the patient beyond postponement of death.”^4(p4) 

Although many might agree with substantially disproportionate harm (as perceived by the health care team) as a reasonable threshold for overriding patient or surrogate preferences for LSMT, the matter remains unsettled. Some in pediatrics would maintain, for example, that even substantially disproportionate harm may be an insufficient basis to override parental preferences, unless the parent is not meeting the child’s basic needs or appears to be acting with malicious intent.⁵  Proponents of such a position observe that harm and medical benefit are subjective, values-based determinations when a treatment is not physiologically futile (ie, when the treatment has “at least some chance of accomplishing the effect sought by the patient”).^1(p1319)  In fact, some patients and families may perceive life-prolongation per se as a reasonable primary goal of treatment that is not outweighed by suffering.⁶  This may be true even in circumstances where a patient is not expected to survive to intensive care unit discharge or is likely to survive indefinitely but with severe, irreversible neurological injury. Further, in analyses that weigh benefits against harms or burdens, surrogate prioritization of life extension as the primary goal is difficult to counter in patients with permanent disorders of consciousness (such as unresponsive wakefulness syndrome) that may preclude the patient’s ability to experience harm or existential suffering. Still, for critical care nurses, who often are those tasked with administering burdensome interventions, the experience of doing so even when patients cannot experience suffering can engender substantial moral distress. It should also be noted that research involving functional magnetic resonance imaging in individuals with disordered consciousness has shown that some may have more capacity for awareness than is indicated by their behavioral exam, warranting prognostic humility.⁷ 

Many would acknowledge that, although the most intense and enduring impacts of treatments are borne by patients and their families, the moral distress experienced by clinicians when asked to provide treatment they perceive as inappropriate ought to carry some weight.⁸  Moral distress has been described in the nursing literature as arising when “clinicians recognize ethical conflicts and their responsibility to respond to them but are unable to translate their moral choices into ethically grounded action that preserves integrity.”^9(p111)  Unaddressed, moral distress can leave a harmful “moral residue” when accrued over time.¹⁰  Such distress has been discussed and examined most often in nurses, but there is a growing recognition that moral distress is experienced by many clinicians in a variety of health care roles.¹¹  Caring and dedicated clinicians, often drawn to the profession by their compassion and desire to heal, can sense a loss of their own humanity and may experience despair when expected to provide potentially inappropriate treatment. In our experience, clinicians’ moral distress, and that of nurses in particular, may be fueled by perceptions that they are inflicting physical harm, committing affronts to a patient’s dignity, or keeping precious resources from others more likely to benefit from them. Such distress, which is common in intensive care, risks undermining clinician well-being and, by extension, clinical performance, communication dynamics, and team cohesion.^12-14  It is important, therefore, that health care institutions recognize bedside clinicians as important moral stakeholders in medical decisions and seek to protect them from undue harm associated with sustained and repeated moral distress.

The most direct bedside clinicians—commonly nurses—arguably bear the brunt of moral burden in ethically complex situations because of their physical and emotional proximity to patients and families.¹⁵  Nurses are also uniquely situated within the institutional hierarchy such that they are tasked with carrying out burdensome interventions that have usually been decided upon by others (typically physicians and patients/surrogates) and about which they may disagree.¹⁶  Although the potential harm experienced by nurses and other clinicians is ethically important, it remains nonetheless challenging to determine how much weight to grant clinician moral distress when considering the appropriateness of treatment for an individual patient.

We agree with some who suggest that when nurses and other clinicians experience moral distress in response to treatment decisions being made, the claims of patients or surrogates as emotional and moral stakeholders should generally hold greatest weight.^17,18  This is especially so when the clinical decision at hand involves underlying values about which reasonable people can disagree. Such a decision falls under the multisociety statement’s rubric of “potentially inappropriate treatment,” where we believe clinician moral distress represents an important competing ethical consideration to be weighed in the decision-making process.¹  Most professional societies, including the American Nurses Association, the American Academy of Pediatrics, and the American Medical Association, contend that clinicians are not obligated to provide treatment that they find morally objectionable.^19-21  The American Nurses Association does emphasize, however, that nurses must ensure that the patient’s care can be assumed by another team member.¹⁹  Likewise, when irresolvable conflicts remain, the multisociety policy statement recommends continued provision of treatment while attempting good faith efforts to transfer care either to another willing clinician within an institution, or between institutions.¹  As institutions consider such transfers, they might seek also to establish a team of individual clinicians who are willing to provide care under such circumstances. This can allow some clinicians to opt into a “coalition of the willing” and, when feasible, others to opt out. Establishing such a team would require careful and intentional planning, but it is well in keeping with patient and family-centered care to attempt to match willing clinicians with those patients and families who are requesting treatments that cause moral distress to others.

Additionally, the multisociety policy statement discusses clinician moral distress explicitly and recommends institutional support programs for staff. The responsibility to support bedside clinicians stems not only from institutions’ obligations to the individual clinicians they employ but also from the responsibility to provide the highest quality of care to patients who can be harmed when levels of clinician distress potentially compromise clinical communication and performance.²²  Institutional programs can be beneficial by providing just-in-time support for staff experiencing moral distress at the bedside. For example, our home institution implemented an innovative nurse-led program called the Nurse Education and Support Team (NEST), in which trained nurse coaches provide peer support and education to critical care nurses through rounding regularly on units and providing facilitated discussion forums.²³  In a survey conducted 1.5 years postimplementation, 85% of nurses who participated in the program reported satisfaction with interactions with the NEST coaches, and nearly 80% indicated they would use the program for support with moral distress in the future.²³  Other strategies have been successful elsewhere and include moral distress consultation services, offices of clinician support, and other means of supporting bedside clinicians.²⁴ 

Clinicians have obligations to responsibly steward scarce health care resources, but it is widely accepted that once a therapeutic relationship exists, their primary fiduciary obligation is to individual patients (except, for example, in public health emergencies).²⁵  This obligation can create tension for clinicians who must manage competing ethical obligations to the patient, to other patients in the health care system, and to society more broadly. Accordingly, to mitigate undue bias, many would advocate that individual bedside decisions ought not consider resource allocation in the absence of well-established institutional policy.²⁵  We know, however, that many microdecisions made in day-to-day patient care entail considerations of resource use that are not necessarily understood or articulated as such. For example, critical care nurses often prioritize certain nursing tasks over others when all cannot be completed within the time allotted in a given shift, or within the context of other resource constraints such as staffing shortages.²⁶  Of note, the American Medical Association has cautioned about a possible inappropriate link between resource allocation considerations and determinations about “futility,” stating that “judgments about futility [could] mask a covert motive to conserve resources,” and arguing for transparency about the basis for such decisions.^27(p938)  To our knowledge, no similar guidance has been put forth by professional nursing organizations. Certainly, such caution is warranted for nurses, who are frequently well positioned at the bedside to recognize potential overlap or conflation of considerations of futility and resource allocation (unintentional or otherwise). Nurses should be empowered to raise such concerns to other members of the health care team and, if necessary, to nursing leadership.

In addition to physical harm, aggressive LSMTs may cause “dignitary” harm to patients near the end of life.²⁸  As with conceptions of physical harms and benefits, the notion of dignity is highly subjective and lacks a unifying or widely accepted definition.²⁹  Lack of agreement about what constitutes dignity reflects its elusive nature and the difficulty of assigning relative weight to this element when evaluating potentially inappropriate treatment. Critical care nurse Agnes N. Cho has defined dignity as “the intrinsic value of human beings, inviolably and inextricably tied to their full, vivid nature.”^30(p40)  Cho offers a compelling and comprehensive conceptualization of dignity for the nursing profession that may take its form in “reverence in the face of vulnerability, admiration upon seeing excellence, or relational confirmation amid everyday reality.”^30(p40) 

In our pediatric ethics consultation practice, parents and clinicians sometimes hold differing values around what constitutes preserving or promoting a child’s dignity. Particularly when patients are near the end of life, clinicians—often nurses—may express concern that they are infringing upon a patient’s dignity by administering physically invasive treatments that inflict corporal damage or otherwise feel violative. As previously noted, this may occur even when patients lack the capacity to consciously experience suffering. However, from the parents’ perspective, clinicians’ unwillingness to attempt the requested interventions might itself reflect an act of disrespect toward the child that constitutes dignitary harm. Parents may be willing to tolerate some degree of corporal injury to their child, for example, to achieve other goals such as life extension, preservation of hope for recovery (however unlikely), or reassurance that everything possible was tried to save their child.³¹  Some would posit that honoring patient or surrogate (in this case, typically parents) requests for such interventions may convey strong respect for patient dignity and family values.³²  Ultimately, we assert that a patient’s dignity is best evaluated through the eyes of well-informed, committed, and caring surrogates who know the patient best. Arguably, a surrogate’s evaluation of dignity is preferable to that of a clinician’s, who is presumably less informed about the patient’s values and preferences and may risk being overly paternalistic. Still, clinicians have their own obligations to the patient, and at times may have different perceptions of what promoting the patient’s dignity requires. Notably, the very first provision of the Nursing Code of Ethics focuses on nurses’ obligations to respect the inherent human dignity of all patients irrespective of individual differences.³³ 

Questions about potentially inappropriate treatment sometimes emanate from requests for treatments that fall outside conventionally accepted practice standards. Health care providers generally are not ethically obligated to offer or perform medical interventions that do not represent standard of care. Relatedly, although perhaps more broadly, the multisociety policy statement recommendations regarding potentially inappropriate treatment include whether a high degree of certainty exists that the intervention is outside the boundaries of accepted practice.¹  The guidance on this point is intended to apply specifically to time-pressured situations that preclude the multisociety policy statement’s recommended conflict-resolution process.

One major difficulty with relying on a “conventionally accepted practice” approach is that unless the standards have been well articulated and delineated by a legitimate source (eg, a respected professional organization), ambiguity may remain about where the boundaries lie when using or implementing the practice. Another challenge pertains to the culture at some academic institutions, where clinicians are explicitly and implicitly encouraged to press conventional practice boundaries via (sometimes ad hoc) innovative therapies. Potential bias may occur when clinicians and institutions have interest in pursuing novel therapies that are clearly outside the current conventionally accepted practice standards and that would be denied in other settings. Technological developments undoubtedly will continue to advance, sometimes more slowly and subtly and at other times quite dramatically, constantly challenging and evolving conventional practice norms.³⁴  As happened historically with extracorporeal membrane oxygenation, for example, or intrauterine surgery for fetal spina bifida, institutions’ and individual clinicians’ opinion may differ regarding whether and when certain treatments have evolved to the point of being considered accepted practice or even the standard of care.^35,36  Consequently, protest or support around requests for treatments that are not considered conventional/standard or accepted practice may thus be highly subjective and, perhaps unintentionally, sway to variable institutional and provider interests. Notably, circumstances may also arise in which deviating from conventionally accepted practice is ethically permissible, at the discretion of clinicians, if associated harms of doing so are sufficiently low and if important nonmedical benefits exist that could in turn promote a patient’s interests. For example, a clinical team might support a patient or surrogate request to use an unvalidated herbal remedy that the clinicians do not believe is medically beneficial, if the perceived harm to the patient is sufficiently low and such permission will facilitate better therapeutic alliance with the patient or surrogate.³⁷  Notably, although the multisociety policy statement (and other professional guidelines more generally) only comments on the fact that it is not ethically obligatory to provide therapies that are outside of standard clinical practice, it does not necessarily forbid such interventions. Given nurses’ unique vantage point and consistent presence at the patient’s bedside, they are well-situated to raise concerns within the clinical team about possible deviations from conventionally accepted practice. Nurses can do this in various forums, such as on patient rounds, in interdisciplinary team meetings, or by paging the physician or clinician responsible for the patient’s care directly. Professional nursing standards emphasize that nurses should play an active role in promoting evidence-based practice and safeguarding quality patient care.³⁸ 

As those situated closest to patients and families, critical care nurses commonly find themselves in positions to influence high stakes treatment decisions, and they play integral roles when conflicts arise regarding the appropriate application of LSMTs. Such conflicts may not only deeply and enduringly affect families, they may also create long-term distress for nurses and clinical teams. It is imperative, therefore, that nurses understand the ethical issues that often arise in conflicts over LSMT. The multisociety policy statement, which was endorsed by AACN, asks us to consider “competing ethical considerations” when responding to surrogate requests for potentially inappropriate treatment, but it does not offer clarification of what these considerations are, or how to balance them. Applying this guidance in practice, therefore, remains challenging. Our elucidation of 5 competing ethical considerations that we encounter commonly in practice demonstrates the difficulties and variability in assigning relative weight to competing considerations. Nonetheless, we hope that naming these ethical considerations will advance ongoing professional discourse around potentially inappropriate treatment and provide helpful support for critical care nurses and other clinicians involved in these challenging clinical situations.