Artificial intelligence – computers simulating human thought and decision-making – is now part of our daily lives. It is integrated into our home appliances, our cars, online shopping, facial recognition, and much more. But artificial intelligence being used to make end-of-life health care decisions for a person who cannot communicate his/her own wishes? The technology does not yet exist, but development is under discussion and already generating controversy.
Decisions Tough On Families
An article in the August 2024 MIT Technology Review takes a deep dive into how artificial intelligence might eventually play a role in end-of-life decisions. Obviously, ethical and practical problems would arise if computers become involved in these weighty decisions. On the other hand, problems exist when humans make the decisions, too: The process can be emotionally brutal for loved ones, and can ignite conflict when family members hold different values and beliefs. Some studies show that decision-makers can suffer post-traumatic stress disorder, wondering and worrying if the decision they made was the right one. Would mom have preferred to fight until her last breath? Did we really honor dad’s wishes by allowing him to slip away without intervention? Did the additional treatments we authorized do our loved one a kindness, or a disservice? Two thirds of Americans do not even have an advance health care directive to provide loved ones with a measure of guidance and comfort.
Yet even when an incapacitated person has a health care directive, it cannot guarantee that family stress is eliminated. Family members may still wonder if what is written on that piece of paper, created months or years ago, really reflects what the patient would want now, in his/her current condition and under the current circumstances. The wondering and second-guessing intensifies if the incapacitated person never had an in-person, in-depth talk with family members about his/her preferences.
Personalized Patient Preference Predictor: Your Digital Twin?
The article goes on to discuss the work of David Wendler, a bioethicist at the U.S. National Institute of Health. Wendler recognizes the distress surrogates and family members can experience when called upon to make life-or-death decisions. “It’s really bad for a lot of people,” he says. “People will describe this as one of the worst things they’ve ever had to do.”
Wendler thinks he can help. He, along with Brian Earp at the University of Oxford and other colleagues, believe a computer-generated tool could help alleviate some of a family’s indecision and distress. He plans to build a tool based on artificial intelligence that he calls the Personalized Patient Preference Predictor, or P4 for short. Here is how the article describes it: The team proposes using AI and machine learning to predict a patient’s treatment preferences on the basis of personal data such as medical history, along with emails, personal messages, web browsing history, social media posts, or even Facebook likes. The result would be a “digital psychological twin” of a person—a tool that doctors and family members could consult to guide a person’s medical care. It’s not yet clear what this would look like in practice, but the team hopes to build and test the tool before refining it.
The proposed technology’s ethical implications are already being debated. One early critic is Bryanna Moore, an ethicist at the University of Rochester. She says of P4: “So much of our work is really just sitting with people who are facing terrible decisions … they have no good options… What surrogates really need is just for you to sit with them and hear their story and support them through active listening and validating [their] role … I don’t know how much of a need there is for something like this, to be honest.”
But others see a benefit to P4. Jennifer Blumenthal-Barby, a medical ethicist at Baylor College of Medicine, notes that P4 is not going to provide a definitive answer or eliminate all stress for family members struggling to make a decision. However, she thinks it can provide a bit more peace of mind by letting decision-makers know if their ailing loved one would be “likely” or “unlikely” to desire a certain type of procedure. Others feel P4 may be particularly useful as a guide when patients have no family members to act as surrogates.
You can read more about P4 here.
At this point in time, your best bet to make sure your end-of-life wishes are honored and minimize stress on your family is to create advance directives. There are several types of advance health care directives that are valid in Florida. Read about them here.
