Imagine the following scenarios:
A surgeon prepares to amputate a patient’s foot to save his life, but the patient refuses the procedure. His decline in thinking and memory raises doubts about his ability to consent, and he has no family or friends to help with the decision.
A 17-year-old declines a liver transplant, while her mother insists on going forward with the lifesaving surgery.
Siblings stand divided at the bedside of their 85-year-old mother with dementia, one rejecting a feeding tube, the other calling it a basic human necessity.
I am a hospital ethics consultant, and these are the kinds of situations my colleagues and I regularly encounter. Yet many people are unaware that hospital ethics consultants even exist – or that they can ask for one.
Who are hospital ethics consultants?
Healthcare ethics consultants are trained to help patients, families and clinicians navigate difficult medical decisions.
They could be called in situations where healthcare staff struggles with providing procedures such as cardiac resuscitation that are unlikely to benefit the patient and might even cause more pain and suffering. They could also be called when it is unclear who has authority to consent for a patient’s care, or when end-of-life decisions are complicated and resources are limited – such as ICU beds and ventilators during COVID-19.
Ethics consultants come from a range of disciplines: physicians, nurses, social workers, chaplains, lawyers and philosophers who have specialized training and experience in clinical ethics. Since 2018, ethics consultants are increasingly pursuing formal certification through the American Society for Bioethics and Humanities.
What is their origin?
The modern field of bioethics emerged from the 1947 Nuremberg Doctors’ Trial, where Nazi physicians were prosecuted for conducting brutal medical experiments on imprisoned people.
This led to the 1947 framework outlining ethically acceptable human research called the Nuremberg Code, written by a panel of American judges. The 1979 Ethical Principles and Guidelines for Protections of Human Subjects of Research, called the Belmont Report, followed the Nuremberg Code. The Belmont Report turned the ethical ideals of respect for persons, beneficence – to do good – and justice into a regulatory framework to protect vulnerable and marginalized medical research participants in the U.S.
In the 1980s, many of these ethics protections moved from the research lab to the patient bedside. During this time, lifesaving technologies such as the ventilator, dialysis machine and organ transplantation created new, difficult ethical questions: When should life support end? Who decides? And what happens when there aren’t enough resources?
A series of court cases and laws expanded patients’ rights, with the Patient Self-Determination Act, a 1990 law which upheld patient rights to refuse or accept medical treatment, marking the key turning point.
High-profile court cases exposed the ethical dilemmas around end-of-life care and patient self-determination. The 1976 case, In re Quinlan, involved Karen Ann Quinlan, a young woman in a persistent vegetative state whose family sought permission from the court to withdraw her ventilator.
Following In re Quinlan was the 1990 case, Cruzan v. Director, Missouri Department of Health, which affirmed that adults have the right to refuse life-sustaining treatment.
Both cases became touchstones for how ethics consultants and care teams navigate the life‑and‑death decisions that have become routine in an era of life‑sustaining technology.
Today, most hospitals have some formal process for addressing ethical concerns in patient care.
What do ethics consultants actually do?
A member of the healthcare team usually requests an ethics consult when they face conflict or uncertainty about the care of a patient. Patients and families can also request an ethics consultation, but in reality, few know this option exists or feel empowered to use it.
The ethics consultant’s first task is to gather as much information as possible from everyone involved to understand the full context of the case. Importantly, ethics consultants do not make treatment decisions; they assist the people who do.
Imagine a loved one with advanced dementia who is in the intensive care unit with respiratory failure and is on a ventilator. The physician believes further treatment will prolong suffering; the family is not willing to let him go.
An ethics consultant would be called by the family or healthcare team to slow things down, provide space to reflect, and help navigate the situation. The ethics consultant will often meet with everyone involved to ensure that all voices are heard and that the patient’s wishes remain central to the discussion.
As part of the ethics review, the ethics consultant would draw on their knowledge of policies, laws and ethical precedent about withdrawing life-sustaining treatment to provide some guardrails for the situation. In this case, a legal guardrail might be that the physician cannot remove the ventilator without the family’s consent.
Rather than making a decision, the ethics consultant would then outline the ethical options available from which the patient, family, and healthcare team can choose.
Why are ethics consultants a valuable resource?
Ethics consultants are trained to help people work through not just the medical facts, but the deeply human questions beneath them: What counts as an acceptable quality of life? How do we weigh hope against suffering? How can we know what a patient would want if they cannot speak for themselves?
In these moments, decisions can feel urgent and heavy, and communication can easily break down. Ethics consultants don’t take decisions away from patients or families, and they don’t replace the role of clinicians. Instead, they help ensure that everyone understands the situation, that different perspectives are heard and that the conversation stays grounded in the values and goals of the patient.
They also bring something that families often don’t realize they need until tensions rise: a calm, measured presence. By clarifying misunderstandings, naming sources of conflict and guiding difficult conversations, they help families and care teams find a way forward together.
The choices may still be painful – and there may be no perfect answer – but with the right support, those decisions can feel more thoughtful, more shared and more aligned with what matters most.
This article originally appeared on The Conversation. You can read it here.
