An individual’s hesitance or outright refusal to function as a substitute decisionmaker creates a number of challenges for treating teams, as is highlighted by the case of KS. It is not uncommon for individuals who suddenly find themselves in the role of substitute decisionmaker (SDM) to experience feelings of inadequacy or of being overwhelmed. The natural apprehension that comes with realizing, or being informed, that you are now responsible for providing or refusing consent on behalf of a loved one is often exacerbated by the accompanying circumstances. Even though there are movements afoot to encourage and support advance care planning and the inclusion of those who will become SDMs in conversations about values and wishes, there is still much work to be done. Although the case as presented does not provide information regarding what, if any, processes have taken place prior to the current hospital admission with regard to including the patient’s sister in discussions about future circumstances, it is clear that the sister feels unprepared to assume the role being thrust upon her. What, then, does a clinical ethics consultation have to offer in such situations? The following discussion highlights three ways in which ethics consultation can be of value to both the treating team and the identified SDM: ethics consultation (1) helps the care team and SDM navigate the regulatory landscape, (2) supports the treating team, and (3) supports the SDM.
The Regulatory Landscape
In every jurisdiction in North America there are legislative regulations that guide and direct the practice of informed consent and substitute decisionmaking. In the absence of a formally identified power of attorney, identifying the legislatively designated SDM(s) can at times be complex. There may well be competing interests and agendas as well as family and interpersonal dynamics to contend with. Although clinical ethics consultation should never replace expert legal advice, ethics consultants are often well versed in the regulatory environment within which they function, especially as it relates to matters of informed consent and substitute decisionmaking. In addition to assisting with the identification of who should function in what role, many regulatory frameworks also provide guidance on what SDMs should take into consideration when providing or not providing consent to proposed treatments or interventions.Footnote 1 In the case at hand, there are at least two possible benefits of referencing the relevant regulations. First, although it appears that the younger sister is the appropriate SDM, the care team should explore whether there are any others who have a claim in this regard. This is essential to ensure that the individual providing consent is in fact the legally appropriate person to be doing so. The second benefit is in assisting the SDM in understanding his or her role and function. In the jurisdictions where the regulations specify criteria for substitute decisionmaking, these criteria can be quite helpful for those individuals, as is the case here, who are struggling with feelings of inadequacy or helplessness. Although the regulations do not remove the burdens of decisionmaking from individuals who are struggling, such criteria can be quite valuable in providing a framework within which they can consider the options available to them.
Supporting the Treating Team
As the medical team has asked for ethics support, “to direct the patient’s care and to guide decisionmaking,” it would seem that the goals of care are yet to be clarified. In addition, the outstanding question regarding substitute decisionmaking needs to be addressed. The clarification and establishment of goals of care that are medically, socially, religiously, and culturally appropriate can be some of the most challenging aspects of the care environment. Care teams often have a reasonable understanding of what the medically indicated goals of care should be, but these can become lost in the quagmire of cultural, religious, and social considerations. Even when these other considerations are well expressed and understood, determining what amount of weight to give them vis-à-vis the medical considerations can be extremely challenging. In our case, the patient’s sister is making a cultural claim regarding patient autonomy. The result is that the care team members are challenged with how to respect this claim on the one hand and how to meet their professional ethical obligations to act in the best interests of the patient on the other. In the absence of a willingness or ability on the part of the sister to provide this much-needed contextual information, the team may find itself in a position of being able to consider only medical appropriateness when establishing a proposal for goals of care. It would seem that the team recognizes that this would be insufficient and is thus seeking guidance through ethics consultation. Ethics consultation in this case can help the treating team weigh and prioritize the various contextual and medical realities. This prioritization can then inform the establishment of goals of care that would be both medically appropriate and culturally sensitive.
Supporting the Substitute Decisionmaker
In cases such as this, in which an SDM is struggling with both the responsibility of the role and feelings of inadequacy or helplessness, ethics consultation can serve several functions. The consultant or consultation team can assist the SDM in clarifying his or her role and function. If, as is the case here, the SDM believes that it would be inappropriate for anybody other than the patient to make decisions regarding her care, the ethics consultation can help to clarify the regulatory requirements for decisionmaking for incapable patients. The sister can also be supported in abdicating that responsibility if she feels it is too burdensome. In addition, the consultation can assist her in understanding that, many times, the SDM is simply expressing the voice of the patient at a time when the patient is unable to express his or her own voice. Thus in this case it may well be that the patient is indeed making her own medical decisions but that the vehicle through which this is actualized is the sister. Clarifying this for the sister would thereby relieve some of the anxiety she is experiencing due to the belief that the patient does not have a voice, which would in her mind be culturally inappropriate. Another important benefit of ethics support can be to provide information and support that can be understood to be bias-free and independent. It does not appear in this instance that the sister is suspicions of the motivations of the treating team, but where this is the case, having an independent, neutral individual or group available for support can be invaluable.
Synthesis
Ideally, the consultant or consultation team would meet with each of the parties individually and then facilitate a meeting between the treating team and the sister (as well as including any other family members or supports that the sister wishes to have present). In this case, engaging in a shared decisionmaking process would be an appropriate approach. This would enable the treating team to make a presentation of what it believes would be most medically appropriate in addition to allowing the sister to express the patient’s values, wishes, and any other contextual features she feels are relevant. The consultation can assist all parties in prioritizing any competing values or perspectives with the goal of achieving a common understanding of what goals of care would be most medically appropriate, culturally sensitive, and in the patient’s best interests. If, though, at the end of the day, the sister feels unable to fulfill her responsibilities as an SDM, it should be made clear that the treating team will need to secure another party to function in this capacity, be it another family member or through the regulatory process in their jurisdiction.
