Taking Stock

A widely accepted view in medical ethics circles is that “substitute decision-makers,” or individuals who are making a medical decision on behalf of someone who is unable to make decisions herself, should choose based on what the patient “would want” if only she could speak up. This notion of “would want” is based on the fanciful idea that if the patient could temporarily emerge from coma or dementia or delirium—whatever is getting in the way of her actively participating in medical decision-making—and could look down at her actual self, she would have a definite opinion about what course of action to pursue. 

There’s another, sometimes equally fantastic idea at the heart of the substitute decision making model. This idea relates to how substitute decision-makers should figure out what the disembodied patient would want for herself. The idea is that surrogates can infer what the patient would, hypothetically, want if they consider the past choices the patient has made. Now, this is sometimes fairly straight-forward. If, for example, the patient was faced with almost exactly the same situation previously but was at that time able to make a decision herself, then the surrogate can conclude she would make the same decision this time. That isn’t strictly speaking true, because there is at least one critical difference between the earlier situation and the present one, and that’s precisely the loss of capacity. The patient might, for instance, have chosen life-prolonging treatment at a time when she was cognitively intact but now has developed dementia, so receiving the same kind of treatment now as then, if successful, would entail prolonging a qualitatively very different type of life. 

More commonly, the patient never before faced the precise clinical situation she confronts today, but she behaved in certain predictable ways in the past that allow the surrogate to extrapolate from then to now. She might have repeatedly refused to take medications when offered treatment. But does refusal to take pills against depression or antibiotics for an infection that was probably, in retrospect, viral, imply that she would refuse potentially life-prolonging chemotherapy for cancer? 

What all these scenarios have in common is the belief that people are consistent across the years, that they have a constant set of values and beliefs or, better yet, a coherent life narrative. Palliative care makes use of an analogous framework for different reasons. Rather than being concerned with what medical treatment people would want if they could choose for themselves, it is interested in making sure that the last “chapter of life” fits with the previous “chapters,” forming a unified, intelligible narrative. Both the ethicists’ goals and the palliative care clinician’s goals are laudable and the strategies constitute reasonable, well-intentioned approaches to solving inherently insoluble problems. Yet, in a very fundamental way, these strategies are at odds with what countless Americans do every January 1—make New Year’s resolutions. A resolution entails looking back, much as do the ethics and palliative care paradigms, but then deliberately opting for a course correction. They are our chance to assert that we don't like all or part of our past behavior and we want to alter our trajectory. Perhaps we were very consistent in the kinds of choices we made, but now we see those choices as selfish or dangerous or otherwise wrong-headed and we aspire to pursue a course that’s not of a piece with what has come before. Maybe we think our earlier choices were reasonable when we made them, but circumstances have changed—before, we were in good health, now we are in poor health; before, we thought global warming was a theory that might prove incorrect, now we realize it is a real and present danger; before, we had friends and family, now we are all alone. 

The concept of the New Year’s resolution, according to “Inside History,” is at least 4000 years old. The Babylonians promised their gods they would improve their conduct—in exchange for a good harvest. The Romans under Julius Caesar also made an annual pact with the gods. Christians ask for forgiveness for their mistakes and pray for a better future. Jews on the Jewish new year, Rosh Hashanah, also look both backwards and forwards; then, on Yom Kippur, which follows just a few days later, they ask those they have wronged to forgive them and they seek to make amends. In every case, human beings simultaneously acknowledge the cyclic nature of life, with its predictable repetitiveness, and recognize the possibility of change. I like the tradition of taking stock. I think it is useful to review our journey to the present, where we have been both physically and emotionally, what we have accomplished, where we have failed. Some years, this process may focus on reviewing our finances or our advance directives; other years, it may focus on our career or our relationships. Whatever slice of life we choose to examine, we have the free will, the agency, the self-control to change. We are not always able to make radical changes, nor can we escape our genetic limitations or other fixed constraints. As we near the end of life, we cannot realistically undertake to make changes that would take many years to implement or that require more energy than we can muster. Nonetheless, when we take stock, we have the opportunity to interpret our past. Perhaps we will see our lives not as following a straight path towards the end but rather as a voyage with many twists and turns.