Are there Truly No Atheists in Foxholes?

A nagging concern about advance care planning is the possibility that patients may change their minds when faced with imminent death. That’s not a problem if the person is still able to make decisions and really can change his mind. But for the majority of older people whose thinking is impaired at precisely the time that a potentially life or death decision about their medical care must be made, it is very much a problem. By etching their wishes in stone, is an advance directive too inflexible? Does it make it hard for surrogate decision-makers to change their minds on the patient's behalf?

We know that patients do change their minds over time as they adjust to their new (and presumably more  limited) level of functioning. The most extreme case that’s been described comes from younger patients:  individuals with quadriplegia after an accident are initially despondent; after they adapt to their situation, they still aren’t happy with their status, they would still much rather not have quadriplegia, but many if not most of them come to recognize that they are still human beings with emotions, feelings, and abilities. Whatever suicidal tendencies they had at the onset of their disability have typically abated. 

Older people also change their minds over time about what they are willing to live with, but a substantial proportion shift from wanting their medical care to focus on prolonging life at any cost to wanting their medical care to focus on maintaining their level of functioning. And older patients who were recently hospitalized for a serious illness such as heart failure or a flare of COPD, when asked about what matters most to them, reportedly say they would not want life-prolonging treatment if it left them with severe cognitive impairment. But what about the very moment that they are in the hospital, acutely ill, and confronting their own mortality? Do they also say they would rather die than be left with dementia or profound disability? A research letter in JAMA Internal Medicine finds that many of them do.

It’s a small study (only 180 patients) conducted at a single academic medical center (in Philadelphia). They were all, by definition, able to engage in a discussion (actually a structured interview) about their preferences. They were all seriously ill, suffering from advanced cancer, severe heart failure or advanced lung disease. They were asked about 10 different possible forms of functional debility: bowel and bladder incontinence, relying on a breathing machine, unable to get out of bed, constant confusion, dependence on a feeding tube, needing constant care, living in a nursing home, being homebound, in constant, moderate pain, or confined to a wheelchair. While they differed in their ratings of various health states compared to death, large numbers rated each of the possible conditions as worse than death, and the first six were viewed as the same or worse than death by over half of all patients.

Now these patients were not actually confused and many of them weren’t incontinent, on a breathing machine, unable to get out of bed, etc., even temporarily. If they were, they might, like the young person with quadriplegia, adapt. But they were in the hospital with a serious enough illness that they could die. Presumably they knew that (though this is not clear from the article). And what is striking is that none of them had any limitations on life-sustaining treatment documented in their medical record. It’s unlikely anybody had spoken to them about which of the treatments they were getting or they might get could in fact leave them with exactly the condition they indicated in the interview they wanted most to avoid.

The possibility that there really are no atheists in foxholes has to be taken seriously. Maybe most people will change their minds about what treatments are tolerable to them if they are sufficiently close to death. The best we can do is to ask people about preferences who do understand something both about the state they may find themselves in and the nature of the treatment being proposed. That means we should do the asking when people already are old, sick, and debilitated, not when they are young and healthy.