Talking with your parents about what they actually want
It is awkward talking about the end of life with anyone. It is even more awkward to talk about it with your parents, but it is important because 30% of adults 60+ reach a point where someone else needs to make a medical decision for them (Silveira et al., 2010). So here are some tips for making that conversation easier.
- Lower the stakes. This is not one Big Talk where everything gets decided. It is a handful of small, ordinary conversations over time: in the car, doing the dishes, after a doctor's appointment. You are not asking your parents to sign anything today. You are just trying to understand them.
- Make it about them, not about death. The useful question isn't, "Do you want to be kept alive?" Better questions are: "What makes a day good?" "What would make life not feel worth living to you?" and "What are you afraid of?" You are mapping their values, and the medical choices follow from there.
- Go first. It is far less threatening if you share your own wishes, or talk about a friend or relative you both knew and how their situation went, well or badly. A story is usually the easiest door in.
- Ask who, not just what. Find out who your parents would want making decisions, who they would not, and whether the person they'd name actually knows they've been chosen and is willing to do it. Name a backup, too, in case the first person is unreachable or too shaken to act.
What you are really after is the line between what your parents would accept and what they would consider going too far. That line is different for everyone. The best way I know to find it is to talk through some concrete situations together. Here are a few worth discussing. Ask your parents what they would want, and ask them why.
A few scenarios to talk through
- The sudden stroke. Your mother has a major stroke. She survives, but she can no longer speak, feed herself, or recognize family, and doctors say meaningful recovery is very unlikely. A feeding tube could keep her going for years in that condition. Would she want that? Or would she want comfort care and to be allowed to die naturally? Talk about: is there a level of recovery below which she would not want to be kept alive? Would she like a time-limited trial? She could try aggressive treatment for a set period, then step back and reassess honestly.
- The long goodbye of dementia. Your father has advanced dementia. He no longer knows where he is or who you are, but he is not in pain. He develops pneumonia, which could be treated with antibiotics and a hospital stay, or managed at home with comfort care. What would he want? Talk about: as the dementia progresses, does he want every treatable illness treated to extend his life, or is there a point where he would prefer comfort over more time? Where does he want to be for it? his home? a hospital?
- The treatable crisis. Your parent, otherwise doing well, collapses from a severe infection. A few days on a ventilator in the ICU would very likely leave them fully recovered and back home. This one matters precisely because it is not like the others, most people say yes to aggressive treatment when the odds of real recovery are good. Talk about: what makes this different from the first two scenarios? It helps your parents see that "do everything" and "do nothing" aren't the only options. What changes the answer is the odds of recovery and the quality of life on the other side.
- The terminal diagnosis. Your parent has a cancer that treatment can no longer cure. More chemotherapy might buy a few extra months, but with hard side effects; stopping it means hospice and likely more comfortable time, though less of it. Talk about: would they trade length of life for quality of it, or the other way around? Where would they want to spend that time? What is the thing they would most want to still be able to do?
There are no right answers here. The point is to hear how your parents think, so their proxy can carry that thinking into a room your parents can't be in. When you learn something, write it down, tell the proxy, and keep it with the documents. And come back to it: people's views shift as their health changes, and what your parent said five years ago may not be what they would say today.
The documents, in plain English
There are really only a few pieces here, and they do different jobs:
- The health care proxy (durable power of attorney for health care). This names the person who makes medical decisions when your parents can't. If your parents do only one thing on this page, do this because no document can anticipate every twist of a real medical crisis, but a person who knows their wishes can. A proxy beats a living will alone, and having both is better still.
- The living will. A written statement of which treatments your parents would or wouldn't want if they can't decide for themselves — things like CPR, a ventilator, or a feeding tube — and under what conditions. It records their wishes, but someone still has to read it and apply it to the actual situation.
- POLST or MOLST. A medical order, signed with your parents' doctor, that emergency and hospital staff can act on immediately. Massachusetts calls it a MOLST; other states use POLST, POST, or a similar name. This one is not for everybody, it is meant for parents who are already seriously ill or frail, where a crisis is genuinely foreseeable. A healthy parent planning ahead doesn't need one yet.
- DNR and its cousins. A DNR (do not resuscitate) order in the chart tells staff not to attempt CPR. Related orders cover specific choices: a DNI declines a ventilator, a DNH says don't send them to the hospital from a nursing facility, and an out-of-hospital DNR tells EMTs the same thing at home. These are medical orders, so a doctor puts them in place.
Most people end up with both a living will and a health care proxy, so their wishes are on record and someone is empowered to interpret them.
Choosing and preparing the proxy
Your parents should pick someone they trust to understand their values, stay calm in a hard moment, and speak up to doctors on their behalf. This may or may not be a spouse or the oldest child, and it does not have to be a relative at all. What matters is that the person can handle pressure and will honor your parents' wishes rather than their own. Name a backup in case the first choice is unavailable. With phones and video, the proxy no longer needs to live nearby, though someone who can get to the hospital is a plus.
Two practical points families miss. First, the proxy needs to have actually heard your parents' wishes Second, privacy laws (HIPAA) can block even close family from getting medical information; the proxy form is part of what gives your parents' chosen person the access they'll need, so make sure it is signed and on file, not just discussed.
Make the documents easy to find in a crisis
A directive nobody can find is no better than one that was never written. Once the forms are signed and witnessed or notarized as your state requires, get copies to the proxy and the backup, to your parents' doctors, and into the medical record or patient portal so the hospital has them. Keep the original somewhere known and reachable. A document locked in a safe deposit box the family can't open at 2 a.m. won’t help very much. Some states, such as California, Nevada, and Arizona, have registries that store directives for quick access, and a wallet card noting that your parents have a directive and where it is kept can help first responders. If your parents split the year between two states, fill out a valid form for each and keep a copy in both places. Revisit everything about once a year and after any big change and replace old copies so no outdated version is floating around.
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