When Family Members Can't Agree About End-of-Life Care

One of the biggest reasons I talk about advance care planning is because I have seen what happens when families are suddenly put in the position of having to make decisions for someone they love. When everyone agrees, it can be difficult enough. When family members disagree about what should happen, it can become incredibly complicated very quickly.

For this article, I'm going to be talking specifically about Maryland. That's the state I live in, the state where I practice and the state where I spent years working in fire and EMS. It's also the state where I've been on the other side of this as a family member with a loved one in hospice. I know Maryland's terminology and processes because I've encountered them professionally and personally. Every state handles advance directives, health care decision-making and end-of-life documentation differently, so if you live somewhere else, the important thing is to learn what applies where you live rather than assuming Maryland's process is the same as yours.

Here in Maryland, one of the most important things you can do is have an advance directive. You want your health care agent clearly named and you want to have an actual conversation with that person about what you want. Don't just assume that your spouse, your oldest child or whoever you think will be there will automatically know what you want. Put it in writing and make sure the person you've chosen knows that you've chosen them.

I also want you to think about how much leeway you want to give that person. Do you want your health care agent to be able to talk to your physicians, understand your diagnosis and prognosis and make decisions based on the information they're being given? Or do you have very specific things that you absolutely do or do not want? Maybe you want them to have some room to say, Okay, this treatment could potentially get Mom home again, let's talk about it. Or maybe you've said, If I have a terminal condition and treatment isn't going to change the outcome, I do not want aggressive treatment. I want comfort care. I don't want surgery. I don't want certain interventions. Those are conversations you need to have while you are able to have them.

This is also where the Maryland MOLST comes into the conversation. A MOLST is a medical order that addresses specific life-sustaining treatment decisions based on your current medical situation. It works alongside your advance care planning and can communicate specific medical orders regarding things like CPR and other life-sustaining treatments. Your health care professional can walk you through the choices and what they mean for your particular situation.

Because here's where things can get really messy. Let's say one sibling says, Do everything. I don't want Mom to die. Another sibling says, I know Mom. She told me she never wanted aggressive treatment. But Mom never put that anywhere in writing. Now you've got two people who both genuinely believe they're advocating for her. One is saying, She would want everything done. The other is saying, She absolutely would not. Then maybe a third sibling who hasn't spoken to the family in ten or fifteen years shows up and says, But I'm her sister. I should have a say in this.

That's when the family can find themselves in an incredibly difficult situation.

In Maryland, if someone cannot make their own health care decisions and there isn't an available health care agent, there is a legal order for who can act as a surrogate decision-maker. Who has authority depends on the circumstances and the relationship to the patient, which is one of the reasons it is so important to understand the rules where you live before you're in the middle of a crisis.

When multiple family members have a role in decision-making, disagreements can become incredibly difficult. One person may be focused on doing absolutely everything possible because they aren't ready to lose their loved one. Someone else may be focused on what they believe that person would have wanted. Someone else may have a completely different understanding of the situation.

Meanwhile, the person at the center of all of this is the one who is sick, dying or unable to speak for themselves.

That's the part that bothers me the most. While the family is arguing about what Mom would have wanted, Mom may have actually told them what she wanted. She just didn't put it somewhere that could clearly guide the people making decisions for her.

This is why these conversations need to happen before there is a crisis. Don't wait until you're in the ICU. Don't wait until somebody has been diagnosed with a terminal illness. Don't wait until the ambulance is on the way. You can be young and healthy and still have an advance directive. You can have absolutely no reason to think you're going to need it anytime soon. That doesn't mean you shouldn't have one.

Please don't just fill out the paperwork and throw it in a drawer. Tell your health care agent that they're your health care agent. Give them a copy. Make sure the people closest to you know who you've chosen. Talk to the people who are closest to you about what you want. If there are things you feel very strongly about, say them out loud and put them in writing.

You also want to make sure your documents are accessible. There's not much benefit to having your wishes documented if nobody knows where the paperwork is when it is actually needed.

This is where being specific really matters. Don't just say, I don't want to be kept alive. What does that mean to you? What treatments would you accept? What treatments would you refuse? Would you want a trial of treatment if there was a reasonable chance of recovery? What if you're permanently unconscious? What if you're terminally ill and treatment is only going to prolong the dying process? What matters to you when you're thinking about quality of life?

These aren't easy conversations. I know that. Nobody particularly wants to sit around the kitchen table and talk about what happens if they can't make their own medical decisions anymore. But having an uncomfortable conversation now is a whole lot easier than making your children, your spouse or your siblings have that conversation for you while they're terrified and you're unable to participate.

Please remember that having your wishes documented doesn't mean your family has to agree with you. They can think you're making the wrong decision. They can hate the decision. They can be angry about it. They can cry and say, I don't want this to happen. They're allowed to have their feelings. What matters is that you've made your wishes known and you've taken the steps available to you where you live to make those wishes part of your medical decision-making.

That's really what advance care planning is about. It's about making sure that when the worst does happen, your family isn't left trying to guess what you would have wanted. You're giving them a roadmap. You're taking some of that burden off of them and you're making sure that your voice is still part of the conversation even when you can't physically be there to speak for yourself.

If you live in Maryland, learn what Maryland requires and what options are available to you. If you live somewhere else, look up the requirements in your own state. The terminology, forms, legal requirements and decision-making processes can be different from one state to another, and this is not something you want to figure out for the first time while you're standing in a hospital hallway.

Do this before you need it. Have the conversation before you need it. Know who is going to speak for you before they are ever put in the position of having to speak for you.

Families can disagree. That's part of being a family. The more clearly you've documented your wishes and made the appropriate arrangements where you live, the less your loved ones have to rely on guessing what you would have wanted when you're no longer able to tell them yourself.