Today, I spent about an hour listening to an episode of the podcast Hidden Brain by Shanker Vedanta about the difference between deciding something when you are well and making the same decision again when you are dying. There is sometimes a big difference between how people feel about certain possibilities in advanced directives and how they actually face making the decisions in real-time.

This particular story was about a nurse who was perfectly clear with her friends and family that she did not want to have any heroic measures if she was dying—no ventilation, no feeding tube, or intubation. This was all before she was diagnosed with ALS. ALS is, of course, one of the scariest things you can face. Slowly, you lose all of your muscular functions, including the ability to swallow and, eventually, to breathe. The last few months of life with ALS require interventions like ventilation and feeding tubes if one is to stay alive.

My father-in-law died of it when he was 93. He lived with it for about three years, and, in the end, he allowed himself to be fed through a feeding tube, but he did not die of ALS. He had a stroke just as things started to get really difficult, that is, before he needed a ventilator.

Stefanie, the woman Vedanta was describing, got to the point where she could no longer use her muscles and was rushed to the hospital after falling down and being unable to get up again. To his surprise, the husband found that Stefanie asked to be on a ventilator at the hospital, despite her refusal earlier to consider it an option. He took her home attached to the ventilator and feeding tube. He describes the last few months of her life as full of suffering and very difficult for the family as well as Stefanie, though she stayed on the ventilator until the oxygen saturation of her blood fell to crisis level and her husband rushed her to a hospice where she died within a few hours.

Vedanta recalls the death of a woman who was in an iron lung for 53 years before she died. When people asked her why she wanted to live in an iron lung, she replied, “There is always tomorrow.” When we take things one day at a time, as we may well do when we are dying, ventilation and intubation may seem a small matter compared to dying. It may take more courage than we expect to choose that final option.

The husband was the one who saved her life when she couldn’t breathe by taking her to the hospital to relieve the pressure on her lungs from the fluids that build up when you can’t breathe on your own anymore. In the podcast, he talks about whether it would have been better to avoid all the suffering she and the family experienced in the last few months of her life.

As I thought about the choice, I could see how putting off the end as long as possible can have real appeal when we are mortally ill. After all, we can choose to go on one day at a time, but the people around us feel differently. Taking care of someone who needs a feeding tube and a respirator is not something that every family can actually do. It is a full-time job, and Stefanie’s sons moved home to help. They also had to hire a nurse. For the last few months, Stefanie had to be fed every two hours or so, and the only way she could communicate was by lifting one of her forearms off the bed.

It seems essential to consider how whatever decision I make impacts the people around me and if I should push to live to the very last moment possible. I see how easy it would be to make the decision to embark on life on a respirator because you can always call it off if it means an end to a decent quality of life. So, here is the task. Can you define what quality of life means to you? If you couldn’t breathe, if you couldn’t eat, if you couldn’t communicate, would life seem worth living? If you couldn’t walk or watch your favorite TV program, if you couldn’t play games with your kids or fix your own snack, would it seem impossible to enjoy life? 

Rolling it around in my mind, I still see how the “one day at a time” solution could appeal to me. However, when I think about being at home, having my family worried about the respirator, feeding me, or changing me, and trying to talk to me when I can’t speak any longer, I think I would want to save them that misery. So, I am asking you to roll it around in your mind and see what you think. When we talk about advanced directives, we often consider only the suffering of the person who is ill. We don’t imagine the effect it will have on families if they have to carry the burden of care, the expense of care, and the anxiety that the patient could die any minute.

I’d love to know your thoughts about this. Thank heaven there is a place for you to write a few words about how this post affected you. I know some of you will, and I thank you in advance. It’s been a hard one to write.