Bob had been deteriorating for a while and was recently admitted to the hospital. Mary was in a car accident and arrived in the hospital the same day as Bob. Both were in bad shape and needed major medical treatments to even have a chance to survive. The problem was that these treatments might make the dying process worse for them both by adding more burden and suffering than benefit.
Bob and Mary’s families were distraught—and not just because of their family member’s medical condition. They didn’t know what their loved one would have wanted in such a situation. Like most adults, their loved one had never made an advance directive. That means they hadn’t identified who they wanted to make healthcare decisions for them when they became unable to make them. And they hadn’t provided some basic guidelines to that person to ensure that their priorities were respected.
The simplest response to all this might be to observe how important it is for every adult to make an advance directive (AD) and then to provide an easy way to make one. This piece will seek to do both, also suggesting ways that families and pastors can be involved together in the advanced directive development process. Indeed, completing an advanced directive is one of the best ways to ensure that one’s end-of-life wishes are met while also alleviating some of the decision-making burden from caretakers. Yet, with the advance of AI technology, some are proposing the use of such technology as a replacement for human decision-making. There are numerous reasons why careful delineation of one’s end-of-life decisions in an AD should not be replaced.
Will AIs Make ADs Obsolete?
According to the August 1, 2024 issue of MIT Technology Review, there is great potential for AIs to assist with end-of-life medical decision-making.[1] David Wendler, a bioethicist at the U.S. National Institutes of Health, and his colleagues are trying to develop an AI-based tool that can help people predict what a mentally incompetent patient would want. The AI would scour the patient’s medical data, social media posts, and other communications.
If research demonstrates that an AI prediction is reasonably reliable, it could prove helpful in situations where a patient has not produced an AD. It could gather the relevant evidence and alert surrogate decision-makers to the conclusions suggested by that evidence. If a patient has a badly out-of-date AD and the AI can confine its evidence gathering to more recent sources, an AI could alert surrogate decision-makers to any recent evidence suggesting changes in the patient’s thinking. An AI could similarly gather helpful evidence and suggest conclusions when a patient’s AD identifies a surrogate decision-maker without recording much if any information about the patient’s values, beliefs, or priorities.
Nevertheless, there are at least five reasons why an AI may supplement but should not replace a well-developed and timely AD.
First, an AI can at best “guess” (based on evidence) what a person would value or prioritize in end-of-life situations. An AD can record with certainty what a person values and prioritizes, as long as the patient is guided to address the most relevant matters when creating it. An AD that only identifies who the surrogate decision-maker will be is inadequate because, according to the MIT Technology Review, studies show that surrogates fail to accurately predict a patient’s end-of-life decision one-third of the time.[2]
Still, a surrogate decision-maker appointed by the patient in an AD is at least more likely to know how to prioritize conflicting information than an AI is. The reason is that the surrogate actually “knows” the patient—has experienced challenges of life with them. In many cases, they will have experienced together the dying of a family member and will have discussed the decisions being made. Accordingly, even AI developers interviewed in the MIT Technology Review article admit they’d prefer to have their healthcare decisions made by a surrogate decision-maker who knows them (e.g., one identified by them in an AD) than by an AI.
Second, there is a problem with including social media posts as a major source of an AI’s information about a patient. Such posts are sometimes rather reactionary. They do not necessarily reflect a person’s deepest values—those that they would want to guide decisions about their own healthcare.
Third, it may be difficult for an AI to ethically obtain all the information it needs—especially healthcare-related information—without having the patient’s permission. Of course, a patient could create a document giving that permission before losing decision-making capacity. In that case, however, the patient would do better to create a well-developed AD as well, in order to preempt the need for an AI to make guesses about the many matters that a good AD can cover.
Fourth, although it is claimed that an AI would be more up-to-date than an AD, such need not be the case. An AI may indeed have access to more recent data than an AD that was written many years ago and never updated. However, an AD reviewed (and updated if needed) every 1–5 years would probably be even more up-to-date than an AI. The AI will likely draw on information from many years in the past, thereby including information that a patient’s recent AD has intentionally excluded.
Fifth, although the “outside voice” of an AI might sometimes help resolve family disagreements over healthcare decisions, an AD can probably do that better. Family members who disagree with an AI’s recommendation are more likely concerned about the content of the recommendation than they are about who made it. If they know who the patient authorized to make the decision, though, they are more likely to defer to that person. An advance directive includes just such an authorization. If people have a problem with the person authorized when an AD is created, the patient is still available to explain their choice. Such is not the case when an AI is trying to reconstruct the wishes of a patient who is no longer mentally competent.
In other words, the best approach will probably always include people having up-to-date, well-personalized advance directives. But the MIT Technology Review makes an important observation. Since most adults don’t have advance directives now and many might lack the mental capacity to make important decisions about their care when the time comes, it would also be helpful to have a reliable AI tool for patients who lack advance directives. Such a reliable tool is not available now. However, a new tool for developing a personalized advance directive now is.
What to Do Now
Every adult should have a personalized advance directive. Studies show that most adults admit that’s the case, even though only about a third of adults have one. And among that third, a large portion have simply used a standardized form rather than developing a directive based on their particular beliefs, values, and priorities.
One reason that most people never get around to making a personalized advance directive is that sitting around contemplating one’s medical decline and death is rarely anyone’s idea of a good time! But those who are wise will recognize why it’s so important to make the time. They don’t do it just for themselves—they do it especially for their loved ones.
It’s common for people unexpectedly to be in accidents—or else gradually to lose their mental ability—without having made an advance directive. So, loved ones agonize over when to stop treatments that may be of little benefit. They are understandably inclined to overtreat. For example, they may leave their family member on a breathing machine—or unconscious with a feeding tube—for a long time before they die. They don’t want to let their loved one down by stopping too soon. But their loved one may have wanted them to stop; they just never gave the word in an advance directive.
People can easily avoid causing that anguish by creating an advance directive now. And they can save their families much grief by helping all the adults among them create advance directives. Believe it or not, getting together as a family to discuss the values and beliefs each person must clarify in order to make an advance directive is one of the richest discussions ever.
When my family had this conversation, we naturally explored issues of life, faith, death, and eternity that had never before been so easy to discuss. Each person doubly benefitted as we created our own advance directives and became equipped to understand and carry out one another’s. In hindsight, it stands out as the richest several hours we ever spent together as a family.
Our family had the benefit of a theological bioethicist in their midst. Most families don’t. But they don’t need that level of expertise. What they need is what their pastor can readily provide them. Their pastor can connect them with the God-honoring materials on the two websites discussed below. Those materials will raise questions as people try to apply them to their lives Pastors are uniquely positioned at the intersection of Life and Ethics Avenues, where those questions need to be answered. Pastors can provide not only individualized counsel but also education for their people via some form of Faithful Medical Decisions ministry (see below).
New Online Resource
To make the process of developing a personalized advance directive easier and more pleasant, a new online tool has recently been developed. Located at MedicalDecisions.info, it’s completely free to use (without any ads to endure!). It’s also private, asking users for no personal information and not storing any of the choices that users make while using the site.
Drawing on 45 years of experience in the field of bioethics, I coordinated several years of work involving many people with special expertise in medicine, ethics, and other relevant fields. The goal was to enable people to connect their particular values, beliefs, and priorities to decisions regarding their end-of-life medical care. The resulting tool was tested and refined by a large number of people with medical, legal, ethical, theological, or other professional expertise, plus many others without such expertise who differed in age, gender, ethnicity, education, and other characteristics.
The result is a series of natural scenes though which a pathway runs and periodically branches. The user travels down the pathway and makes a choice wherever a branching occurs, reflecting one of their core beliefs, values, or priorities.
After landing at the homepage, shown above, users select the “Advance Directive” button in the lower-right part of the screen if they have come to create an AD. They are then oriented to what lies ahead and transported to the start of the pathway. At each place where the pathway branches, there is a “Click Here” signpost. Selecting that allows the user to see what each branch in the path stands for.
When users choose one of the path branches, they visually move down that pathway and into another natural scene. Step by step, users are identifying the beliefs and values they want to guide healthcare decisions for them.
Three Short Videos
There are up to three places in their walk where users will be offered the opportunity to get more information to inform their decisions by watching a short four-minute video.
One video is offered if they choose a pathway indicating that they want every technology that could offer the slightest benefit no matter how much suffering it causes. The problem with choosing this pathway is that people often don’t realize that some technologies in some situations can make the situation worse. It can be an idolatry of technology to use them—just because they’re there. They may only be adding burden and suffering to a death that can’t be avoided.
The result may be a later—and less peaceful—death. The value of avoiding overtreatment is explained in the video, and users are given the choice to take another pathway if they prefer.
A different video is offered if users choose the pathway indicating they might want to resort to medically assisted suicide in certain situations. Why professional groups of physicians and disability rights groups consistently oppose this practice is explained, along with other dangers it poses. After these shortcomings are unpacked, users are given the choice to take another pathway if they prefer.
The third video is one users will be offered no matter what set of pathways they take. A message appears explaining that which pathway one takes will likely influence whether they die a little sooner or a little later. That means people might well want to consider what it’s like to be dead, so that they can include that consideration in their calculus of treatment pros and cons. There are many views out there about what death entails. Users are simply offered here one view that can prod and help clarify their thinking. It’s just a few minutes long and contains a presentation of the gospel as well.
The gospel presentation notes that what our experience will be like after dying depends not on whether we’re good but on whether we’re forgiven. Regardless of our particular views about death and dying, the video portrays the biggest issue of our life as our relationship with God, who created us. Everyone has a natural inclination to go their own way—to reject God. For rejecting God, they deserve severe punishment. God is just, so that penalty has to be paid. But being thoroughly loving as well, God paid the penalty!
That’s what’s so good about Good Friday—Jesus Christ on the cross is God paying the penalty for our self-centeredness. On that basis, God offers us forgiveness if we are willing to receive it and follow the way of Christ. Those who are willing can look forward to a glorious eternal life that begins even now with the assurance of God’s love and guidance in the face of life’s worst challenges.
That’s the third video. No one has to view any of the three videos—they’re simply offered. But going through this resource with an unbelieving family member or friend—for example, to help them create their own advance directive—can be a great way to share the gospel with them. It opens the door naturally to ask them if they have any questions about the “What Death Is Like” video.
Personalized Advance Directive
When users finish their walk down the paths, they will see their own advance directive displayed on the screen, ready to be printed or downloaded to their computer. If they download it, they can type in their name, the names of the people who will be making decisions for them, and so on. It will be a legally valid advance directive tailored to their priorities.
Those who need clarity regarding what values Christians should be reflecting in their advance directives can find those explained through a ministry called Faithful Medical Decisions. Those who select “end-of-life medical decisions” there will have several options, the third bullet point being “Christian Perspective.” Selecting that brings people to an easily understood, biblically based discussion. It’s organized into seven relevant topics followed by a list of additional helpful resources. The topical discussions include direct access to each of the three videos in the MedicalDecisions.info tool.
Current Treatment Decisions
Eventually, though, people will probably have to make actual end-of-life medical decisions for themselves (if they’re still mentally able) or for a loved one. The MedicalDecisions.info tool can also be used to help them bring their values and beliefs to bear on those decisions. When users select “Current Decisions” rather than “Advance Directives” on the site’s home page, they’ll soon be given a document containing six key questions. A doctor will need to answer those before the implications of Christian faith for the treatment options can be identified.
Then users can start their journey down the pathway where they’ll be making similar but somewhat different choices compared to the advance directive choices. Some pathways will lead them to an opportunity to see one of the first two videos. But every pathway will, at some point, give them the opportunity to see the gospel video. At the end of every pathway, they’ll receive a document. That document will help them explain to their doctor which treatment option they want—and why.
Bob and Mary may have been quite faithful in their living. Yet they didn’t recognize that we are also called as Christians to be faithful in our dying. Working out the implications of their values and beliefs for end-of-life medical decisions early on, through an advance directive, would have made such a difference. If only a pastor had flagged that need for them and offered to help them connect their Christian values with their medical priorities. People now have the online tools to do that, making their end of life a blessing to those they leave behind. With the church’s help, they can make advance directives now—and current medical decisions later—in a God-glorifying way!
References
[1] Jessica Hamzelou, “End-of-life Decisions Are Difficult and Distressing. Could AI Help?” MIT Technology Review, August 1, 2024, https://www.technologyreview.com/2024/08/01/1095551/end-of-life-decisions-ai-help/.
[2] Hamzelou, "End-of-life Decisions Are Difficult and Distressing.”