How Do You Want to Spend the Last Days of Your Life?

This isn’t a fun question, but it’s an important one: What kind of death do you want? If you found out tomorrow that you had –God forbid–terminal lung cancer, and were given 6-8 months to live, how would you want to proceed? How do you feel about respirators, tracheotomies, feeding tubes, and bedpans? Are you an organ donor? Do hospitals make you anxious? Do you want to just keep trying treatments as long as is physically possible?

Now, try this: do you know how your parents would answer any of these questions? Do you know what’s most important to them? Is it quality of life? Is it lifespan? Is it making it to certain family events?

On Monday my mother would have turned 56. She died almost two years ago, in a hospital bed that was set up at our house. She was surrounded by family and sunshine when she died. She did not appear to be in any pain.

Dying is horrible any way you slice it. I volunteered at a hospice for a year before my mother was even diagnosed with cancer, and I have to say, it’s never easy to watch someone fade away. But watching someone die with his family, going peacefully is actually pretty beautiful, despite being horribly sad. We are all going to die, and we don’t all get to plan it exactly the way we want, but most of us will have enough warning that we can and should plan to do it on our terms. Maybe it’s crazy, but I’m 26 and I have spent a lot of time thinking about how I want to die. For the record, if I get a choice, I want to go at home, with my family, not in pain.

This can be (but obviously doesn’t need to be) a Jewish issue. We have some articles on MJL about writing your ethical will, and planning for your death. And certainly a lot of people are guided by their faith when they make decisions about healthcare. But at its crux, this is a human issue. What do you want your experience of death to be?

There’s a famous story in the Talmud of the death Rabbi Judah HaNasi. He was very ill, and had already summoned his children and his students to give them final pieces of advice. R. Judah had a maidservant who prayed that he would be saved from death, but then she saw that he was constantly going to the bathroom and having to take off and put back on his tefillin, which was very painful for him. When she realized how much agony he was in, she changed her prayer, and wished that he would quickly take his way to the land of the angels. Meanwhile, all of R. Judah’s students were busy praying fervently for his life. The maidservant took a pot and threw it on the ground, where it shattered and made a loud noise. The noise distracted the students from their prayers, and in that moment the soul of R. Judah departed.

The maidservant is the hero of this story. R. Judah was ready to die. His students were not ready, and were holding him in this world, despite the pain it was causing him. Only the maidservant could ultimately release him to the World to Come.

There are some people who want to rage, rage against the dying of the light, and I think that’s absolutely fine–if that’s what they want. The problem is that so often, we really don’t know what we want, or what the people we take care of want until it’s too late. So do yourself and your family a favor and have this conversation now, this week. You will very likely have to have it again when dealing with a grave illness, perhaps several times as you reevaluate the medical reality. But please do it.

The New Yorker a couple of weeks ago had a wonderful (and lengthy) article about the ways that people avoid talking about death even when they’re obviously dying.

This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?

If you’re comfortable with this default, then that’s fine, but if you’re not, please make sure that your family knows.