By Stacey Kusterbeck
How are you going to justify the decision? This is the question Thomas D. Harter, PhD, asks intensive care unit (ICU) clinicians who are struggling with whether to continue or withdraw life-sustaining treatment. “That becomes really challenging when we do not know what the patient wanted,” says Harter, director of the Department of Bioethics and Humanities at Gunderson Health System.
Even when the patient’s treatment wishes are known, there can be conflicts in which surrogates insist on continuing treatment. In some cases, there are ambiguities in understanding the patient’s wishes in relation to their current medical situation that justify continuing treatment until more information is known.
Harter often gets called to the ICU by clinicians who want help with a conflict over decision-making on treatment withdrawal. “The standard default is to treat. The presumption is we are going to help somebody recover and get better. The medicine drives a lot of that decision-making,” says Harter. Harter challenges the clinical team to justify stopping treatment. Sometimes, the patient’s advance directive is enough to convince everyone involved that the patient would want to stop treatment. In other cases, medical providers say that the treatment simply is not going to work anymore. “Other times, it’s less clear,” says Harter. “If you are going to stop treatment or change the plan, you need to ask yourself: What are you going to hang your hat on?”
In the ICU, a significant percentage of patients lack decision-making capacity. Even if the patient does have capacity, the patient must determine if it is an acceptable trade-off to continue treatment. “That’s when that process of shared decision-making becomes such an important piece of how we move forward,” says Harter.
The ethicist can help to ascertain what the patient wants and also identify the worries and concerns of other stakeholders. A recent ethics consult involved a patient who was injured and paralyzed from the neck down. Initially, the clinical team was making plans to withdraw ventilator support because the patient had made it clear that he would not want to be on a ventilator long-term. In this particular case, Harter made the argument for continuing treatment. The issue was that the patient was on a breathing machine and unable to speak but had something important to convey. Ultimately, the family agreed to have a tracheostomy specifically to allow the patient to communicate with loved ones. “In this case, we were attempting to enhance this patient’s autonomy. Giving him an opportunity to communicate was really important in this case. And this was the only way to do it effectively,” says Harter. The patient ended up deciding to continue treatment at least for the foreseeable future.
“When we are talking about withdrawing treatment, and considering the ethical moral weight of that decision, there is constant tension on whether we have enough information — and what constitutes having enough information,” says Harter. “What is the decision?” is not the only important question. It is also important to consider who is going to make the decision, and why. “The role of the ethicists is to help unpack that. We help to guide and navigate those conversations and create moral frameworks for decision-making,” says Harter.
Wisconsin does not have a hierarchy law. Thus, when there is no power of attorney or guardian, there is nobody with the legal authority to make a decision on the patient’s behalf. Clinicians then follow a medical best interest principle and treat based on what they believe is in the patient’s best medical interest. “If there are going to be future treatment decisions that need consent, that’s when we petition for guardianship,” explains Harter.
In those complex cases, Harter tells the team that there is a need to identify stakeholders who are involved in decision-making. This is especially important if treatment withdrawal is a possibility. It does not need to be family members; in some cases, friends or colleagues come forward to participate in shared decision-making by conveying what they know about the patient. “If the doctor has to make the decision about stopping treatment, we want to be sure it’s in the patient’s best interest as much as we possibly can. We rely on information from what I term as ‘loved ones,’” says Harter.
Ethicists ask these individuals: What would this patient tell us if they were the ones making this decision? If they do not know the patient’s preferences, the default is to continue treatment until it becomes clear it is not going to be effective, either because the risk outweighs the possible benefits or because it is just not going to meet its intended physiology goals. In some cases, though, the loved ones report the patient was very independent and never wanted anyone to have to permanently take care of them. A neurologist might convey that the patient is likely never going to be able to walk independently; and the stakeholder might report that the patient would not want to live if that was the best possible outcome. Conversely, a friend might report that the patient would be happy just being able to watch TV. “The ethicist’s role is not to be an advocate, necessarily, for the patient or family,” notes Harter. Instead, ethicists seek to provide the family with more information. Ethicists sometimes do this by raising questions during meetings that family members might not think to ask. For example, ethicists might say, “Let’s assume we continue treatment. What might the recovery look like over the next three to six months?” That pushes the clinical team to either provide that specific information or to explain that it is unclear. “We can say, ‘Would I be surprised if the patient was able to live independently in a year? Yes, but we don’t know the patient like you do. That’s why you are here, to help us make the best decision possible for this patient,’” says Harter. This conveys to the family that everyone is trying to do the right thing for the patient, based on what is known at the time. “It could be the wrong decision,” Harter acknowledges. If the team is not certain stopping treatment is what the patient would want, the default would be to treat until more information becomes available. Patients may later regain the ability to communicate. Some have expressed that they would not have wanted to continue treatment. “I am willing to risk that — and my reply is, ‘We didn’t want to get this wrong if we were going to do something that would result in your death. And we didn’t have all the information at the time we made the decision,’” says Harter. “It would be much worse if we had to ask ourselves, ‘Did we stop too soon?’ At least since I’ve been here, I don’t recall having one concern about that.”
Unfortunately, many individuals do not make their end-of-life wishes known through advance directives. This leaves loved ones to navigate the process with little guidance. “Family dynamics may strain under such conditions, leading to intractable disagreement between surrogate decision-makers. Past familial wounds, ill-will, and guilt can create factions that complicate the decision-making process,” says Leslie M. Whetstine, PhD, professor of philosophy and Aultman bioethicist at Walsh University.
Ethicists can help to mediate discussions by reorienting the conversation to focus on the patient’s known values, rather than on surrogates’ individual preferences. “Even in the best of circumstances, withdrawal of life support is stress-inducing,” adds Whetstine. Many surrogates have had little experience in this area. Sometimes, family members use language that is not reflective of the reality of the situation. “They may think they are ‘euthanizing’ a loved one,” reports Whetstine. “This presents a unique opportunity for bioethicists to provide education.”
