By Claire Horner.
Ethicists help both health care professionals and patients and their families by working through complex ethical questions or facilitating communication in a conflict. Clinical Ethics Consultation (CEC) is generally defined as “a set of services provided by an individual or group in response to questions from patients, families, surrogates, health care providers or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in health care”. While the role of an ethics consultant is broad and vital in the acute care setting, not every ethically-related issue needs the intervention of an ethicist.
In a pandemic where resources such as ventilators and ICU beds may be in short supply, ethics consultants participate in crafting ethically-sound policies and guidelines for allocation of these resources, drawing important lines around priority categories and preventing discriminatory triage practices. Once a clear and well-crafted policy is in place, the implementation of the policy is entirely medical. Clinical triage officers categorize patients based on condition and risk stratification according to principles of justice and medical need. Ethicists may be available to these triage officers to clarify the policy that governs the decision-making structure, but should not be the ones making the allocation decisions themselves. Clarification about the policy is part of the clinician education for those tasked with implementing it, and may have a secondary function in alleviating possible distress by reassuring clinicians that principles of justice and nondiscrimination have been adequately considered.
Once the triage officers make a treatment allocation decision, the patient’s attending physician communicates that decision to the patient and/or family. Unlike all other treatment decisions in which the physician makes and presents the recommendation to the patient and discusses whether or not the patient wants to proceed with that treatment, this decision is 1) not made by the attending physician, and 2) is not open for discussion about whether or not to accept it. This is not a situation in which patient consent is sought.
Since the role of the ethicist is to “resolve uncertainty or conflict regarding value-laden concerns,” how should the ethicist get involved in the interaction between the patient/family and physician when the allocation decision is communicated? Value-laden conflicts in health care involve conflicts over a decision: e.g., is it the right decision to forego life-sustaining treatment? The ethicist can help identify the ethical issues and stakeholders, elicit values and preferences, and help mediate the discussion about what to do next. In the case of communicating allocation decisions, the decision has been made, and there is no decision point about what to do next. There is no decision-making process for the patient or family to work through, no values to elicit, risks and benefits to weigh, or quality of life to consider. Instead, the task at hand is how to cope with this reality. While ethicists sometimes act as emotional supports for families grappling with difficult decisions, this is usually secondary to the value-laden conflict for which the ethicist was primarily consulted. Where there is no ethical analysis to be done or conflict to mediate, the work of emotional and moral support is best done by the attending physician and spiritual care departments who are better trained and in a closer relationship of trust to the patient and family to provide such services.
After the allocation decision, patients can pursue an appeal according to a carefully-constructed neutral process of committee review. An ethicist may be a member of the appeal committee to advise the committee on any ethical issues that may be affecting the decision, but the ethicist would not otherwise be involved in direct consultation with the patient or family themselves.
Finally, there is an additional concern in the inclusion of ethicists in the communication with patients and families about allocation decisions. CECs are often publicly viewed as an administrative body aimed at reducing costs and ending life-sustaining treatment whenever possible (Valko 2016). Rather than being perceived as supporting patient autonomy, ethicists are conflated with “death panels,” groups of people who decide when a patient has had enough care. While the ethicist is not involved in making allocation decisions, to include them in communicating that decision would likely perpetuate this myth. If the CEC is there to explain the policy to the patient and family, it will likely be seen as an administrative CYA rather than a compassionate act of solidarity. The attending physician is protected from this potential breach of trust by being excluded from the allocation decision-making, allowing the physician to give bad news without the patient or family viewing them as the “executioner.” The ethicist, as an architect of and educator about the policy, does not have such protection, and is more likely to cause distress among the family than alleviate it.
An ethicist’s primary role is to engage in ethical analysis, identify ethically appropriate courses of action, and mediate value-laden conflicts in health care, but in the absence of the need for these interventions, patient and family support is best provided by clinicians and chaplains. Additionally, there is no shared decision-making to work through, and no patient preferences or quality of life to consider. Instead, there is a top-down decision-making structure that is designed from the beginning to be fair and just with the goal of assuring as many people as possible may receive life-saving treatment that will be beneficial. This requires careful ethical analysis and input at the beginning during policy development, education for physicians making and communicating these decisions, and support during the appeal process, but does not involve consultation with the patient or family solely because bad news must be delivered.
(For an opposing view, see: Proving our worth: why clinical ethicists should help discuss treatment allocation decisions)
Author: Claire Horner
Affiliations: Baylor College of Medicine
Competing interests: None
Social media accounts of post author: Twitter @claireihorner