Hard Decisions at the End

At some point someone in a white coat will sit down across from you and ask what you want to do. Continue treatment or stop. Hospital or home. Feeding tube or not. Resuscitate or let go. You will feel that a life is in your hands, and that whichever way you decide you will be wrong.

I cannot tell you what to decide. The medical questions belong to the medical team; ask them everything, more than once, until you understand.

Whose wishes

The first question is not what you want. It is what they want, or would have wanted. If the person can still speak, ask them plainly, even though the conversation is frightening. Many dying people are relieved to be asked; they have been thinking about it and nobody would let them say it. If they cannot speak, look for what they said before, in writing or in passing. “I never want to be kept alive by machines.” “I want to be at home.” “Do whatever it takes.” These are the closest thing you have to their voice in the room.

If there is nothing, you have to guess, and you should guess as them, not as you. Not “what would I want” and not “what would make me feel I had done everything,” but “what would this particular person choose if they could.” That is the whole of your authority here, and it is enough.

“Everything possible”

Families ask for everything possible because it feels like the only way to love someone: to refuse to give up. But everything possible is not the same as everything good. Some of what is possible prolongs dying rather than living. Some of it means a death in an intensive care unit, under bright lights, among strangers, with the family kept in a corridor, rather than a quiet death at home with a hand to hold.

The old masters do not tell anyone how long to fight. What they say clearly is that the state of mind at death matters enormously, and that a calm, unagitated death, in a peaceful room, is one of the most precious things a person can have. When you weigh a decision, you are allowed to put this on the scale. Not only “will this add days” but “what kind of days, and what kind of death.”

They also honor life, and do not counsel hurrying anyone toward death. Less treatment is not holier. The point is that peace at the end is worth a great deal, and it is easy to trade it away without noticing, for a few more days spent in fear.

Love versus guilt

When you lean toward a decision, ask: am I choosing this for them, or so that I will not have to feel something later?

Guilt chooses the aggressive option because it cannot bear the thought of having “let them die.” Guilt also, sometimes, chooses the passive option because it cannot bear to watch. Love asks what this person needs now, and is willing to feel whatever comes of giving it to them.

You will not always be able to tell the two apart. But the question is clarifying, and it is worth five quiet minutes before you answer the doctor. Breathe out. Let the fear of being wrong be present without letting it decide. Then choose, as best you can, as them.

Nobody gets it perfectly

There is no decision here that will feel right in every light. If you stop treatment, some part of you will wonder if you gave up too soon. If you continue, some part of you will wonder if you put them through too much. This is not because you decided badly. It is because you were asked to decide something no one can decide well, with incomplete information, while your heart was breaking.

The quality that matters here is not “correct.” It is closer to “sincere.” A decision made with love, from your best understanding of the person’s wishes, with attention to their peace, is a good decision, whatever happens afterward. The outcome was never in your hands. Only the intention was, and the care. You were the one who stayed and decided. That is not a thing to be forgiven for. It is a thing to be thanked for.