When to say no to dialysis — a conversation nobody wants to have

This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.

You keep thinking you should have this conversation. You know you should. You've read articles about it. You've heard other people talk about having had the conversation. And you keep not doing it. It feels premature. Your parent seems fine. Your parent would probably think it's weird to talk about what should happen if they get very sick. Your parent might think you're saying they're going to die soon. You don't want to upset them. You tell yourself you'll do it next month, next year, when the time is right.

The time is now. Not to be dramatic, but the conversation about what medical care your parent would want if they become seriously ill is too important to wait. This is not a one-time conversation to have when your parent is already sick or near the end of life. This is a conversation to have now, while your parent can participate fully, while they can think clearly, while they can articulate what matters to them. Waiting puts everyone in a worse position.

This conversation is not about death. People sometimes avoid it because they think it's about death. It's not. It's about values. It's about what your parent cares about. It's about how your parent wants to live if they face a serious illness. Some people would want every possible medical intervention to try to extend their life. Some people would want comfort above all else. Most people want something in between. The only way to know is to ask.

Having this conversation now is a gift you're giving your parent and a gift you're giving yourself. Your parent gets to have their wishes heard and respected. Your parent doesn't have to worry about what will happen if they can't make decisions because they've already told you. You don't have to guess or wonder or make decisions based on what you think your parent would want. You know what your parent wants.

Why Now

If your parent becomes seriously ill and is unable to communicate, someone has to make medical decisions. If your parent is married, it might be your parent's spouse. If your parent has designated someone as healthcare power of attorney, it might be that person. If there's no healthcare power of attorney and your parent is unable to decide, it might fall to you. That person has to make decisions about what medical care your parent would want.

Ideally, that person has clear guidance from your parent. Your parent has said what they would want in various situations. Your parent has filled out an advance directive. Your parent has designated someone to make decisions on their behalf. With this information, the person making decisions can make the choice that reflects your parent's values and wishes. The person makes decisions on your parent's behalf, not based on what the decision-maker thinks is best, but based on what your parent would want.

Without this conversation, the decision-maker has to guess. If the doctors say your parent is in a coma and the only way to keep them alive is mechanical ventilation, and your parent has never said whether they would want that, what should the person do? They don't know. They have to guess based on what they think they know about your parent. They might get it wrong. And they have to live with that knowledge forever.

Waiting to have this conversation until your parent is sick is worse. If your parent has had a stroke and can't communicate, is the timing right to be asking them what they would want? If your parent is in the hospital and scared, is that the best time to be making these decisions? If your parent is on medications that affect thinking, are they able to participate fully in the decision-making process? The answers are usually no.

Your parent is also more likely to change their mind about things if the conversation happens when they're healthy and thinking clearly. Your parent might say that they would want to do absolutely everything to extend their life. But if your parent actually faces a serious illness and understands what "everything" means, they might change their mind. That's okay. People are allowed to change their mind. But if the conversation happens now, when your parent is thinking clearly and not scared, your parent's wishes are more likely to reflect what they actually want if they face a serious illness.

Having this conversation also takes the burden off the people who would make decisions on your parent's behalf. If something serious happens, they don't have to make the decision. They have to execute your parent's wishes. That's very different. That's much easier. You're not agonizing over whether your parent would want a feeding tube. Your parent already told you. You're just making sure their wishes are carried out.

What to Discuss

This conversation doesn't have to be about the grim details of every possible medical scenario. It's actually better if you don't start there. Start with the big picture: what does your parent value most? What makes life worth living for your parent? Some people would say family and grandchildren. Some would say independence. Some would say being at home. Some would say being pain-free. Some would say any amount of living, however limited, is valuable. Understanding what your parent values helps guide the medical decisions.

Resuscitation is usually the first specific question. If your parent's heart stops, should the doctors do CPR? CPR means putting a breathing tube in your parent's throat and doing chest compressions. It's loud and violent and frightening to watch. It sometimes breaks ribs. It's sometimes successful at getting the heart beating again. But in an older person with serious illness, CPR is often not successful. Your parent might not want CPR even though your parent might want other treatment. Or your parent might want CPR because for them any chance of recovery is worth it. There's no right answer. But you should know what your parent wants.

Ventilators are a related question. If your parent can't breathe on their own, would they want a machine to breathe for them? For some people, a ventilator is a temporary bridge while they recover from an illness. For other people, if they reach the point where they need a ventilator for long-term survival, they would rather not have one. Some people are okay with a trial of ventilator support to see if they improve, but would want it stopped if they're not improving. These are legitimate choices. Your parent should decide what they want.

Feeding tubes are another conversation point. If your parent can't eat or swallow, would they want a tube to provide nutrition? Some people would want this. Some people would rather not. Some people would want to try it but would want it removed if it doesn't help them recover. Your parent might have a different answer depending on why they can't swallow. Your parent might say yes if it's temporary but no if it's permanent. These nuances matter.

Comfort measures are also important to discuss. If your parent is seriously ill and cannot recover, would your parent want pain medication and medications to reduce suffering, even if those medications might shorten life slightly? Most people say yes to this. Comfort measures mean that the focus of care is on making your parent comfortable, not on extending life. This is sometimes called palliative care or comfort care. Your parent should know that this is an option and should know whether it's what they would want.

Hospitalization is worth discussing. If your parent is very frail, would they want to go to the hospital if they became very ill, or would they rather stay at home with comfort care? Some people would want the hospital. Some would want to stay home. There are good reasons for both choices. Your parent should think about this.

Specific conditions are worth thinking about. If your parent had a stroke and was paralyzed on one side, would they want aggressive treatment to prevent complications, or would they want comfort care? If your parent had dementia and could no longer recognize family, would they still want aggressive medical care, or would they want comfort care? If your parent had advanced cancer, would they want chemotherapy that might extend life by a few months but would have significant side effects? These are specific and difficult questions. But thinking about them now helps you know what your parent would want if they face these situations.

The Documents

Talking about these issues is the most important thing. But putting them in writing is also important. There are several documents that formalize your parent's wishes about medical care.

An advance directive is a document where your parent states what medical care they would want if they became unable to make decisions. An advance directive might say something like "if I have a terminal condition, I want comfort care rather than aggressive life-extending treatment" or "if my condition is permanently unconscious, I do not want a feeding tube" or "I want everything done to keep me alive." Your parent fills out the document based on their values and wishes. An advance directive has legal standing. Doctors are supposed to follow it.

A POLST form is a Physician Orders for Life-Sustaining Treatment form. This is more detailed than an advance directive. It specifically addresses resuscitation, ventilation, feeding tube, and antibiotics in the setting of serious or terminal illness. A POLST form is filled out with a doctor. A doctor signs it. It's an actual medical order, not just a statement of wishes. A POLST form is more useful in an acute care situation because it's clear and specific.

A healthcare proxy is the legal designation of someone to make medical decisions on your parent's behalf if your parent cannot make decisions. Your parent can name you as healthcare proxy, or your parent can name someone else. The healthcare proxy is supposed to make decisions based on what your parent would want, not based on what the proxy thinks is best. It's important that your parent have a healthcare proxy because someone has to be able to make decisions if your parent is unable to.

Your parent should have at least an advance directive and a healthcare proxy. Many people have both. The specific documents vary by state, so your parent should check what's required or recommended in their state. You can find forms online or through your parent's healthcare provider or through an elder law attorney.

Filling out these documents doesn't have to be complicated. Your parent doesn't need an attorney, though it doesn't hurt to have one. Your parent can fill out forms that are available online or through the healthcare provider. What matters is that your parent actually fills them out and that copies are available when they're needed.

Having the Conversation

The conversation itself can be simple. You might say something like "Mom, I want to talk about something that's important to think about. If you ever got really sick and couldn't make medical decisions, what would be important to you? What would make life worth living even if you were very sick?" Start with that big question about values.

Listen to what your parent says. Don't try to convince them that their answer is right or wrong. Their values are their values. You might hear that your parent wants to do anything possible to keep living. You might hear that your parent wants comfort over everything else. You might hear something in between. All of these are legitimate. Your job is to understand and to remember.

From there you can move to more specific questions if your parent seems comfortable. "If you had a condition that meant you couldn't live at home, how would you feel about that? If a treatment would extend your life but would require going to the hospital a lot and would make you feel really sick, would you want that?" Let the conversation develop naturally. You don't have to ask every question in one sitting.

Share your parent's wishes with important people. If your parent has named you as healthcare proxy, that's important. If your parent has specific wishes about where to die or what kind of care they want, that's important. The more people who know what your parent wants, the better chance that those wishes will actually be respected if something happens.

Give your parent's healthcare provider a copy of the advance directive or POLST. Make sure it's in the medical chart. Make sure the doctor knows what your parent wants. When your parent goes to the hospital or the ER, make sure the documents go with them.

The conversation is not a one-time thing. Your parent's thoughts and wishes might change as they get older or as their health changes. It's okay to revisit the conversation every few years. It's okay to change the documents if your parent changes their mind. The point is that your parent's current wishes are documented and known.

Revisiting

People's wishes about medical care sometimes change over time. Your parent might say today that they want aggressive treatment to extend their life. But if your parent faces a serious illness and sees what aggressive treatment actually looks like, they might change their mind. This is normal and okay.

Your parent might change their mind based on experience. If your parent had a surgery and found the recovery harder than expected, they might become less willing to have surgery again. If your parent's spouse died after a long illness, your parent might change their views about what kind of medical care they want. If your parent experiences a significant decline in function, they might change their values about what makes life worth living.

You should revisit these conversations periodically. You might ask your parent again every few years whether their wishes are still the same. You might ask after a health event whether the experience has changed how your parent thinks about medical care. You might ask if anything new has happened in your parent's life that has changed their priorities.

If your parent changes their mind, new documents should be filled out. The new documents replace the old ones. Doctors follow the most recent documents, not the older ones. If your parent updates the documents, make sure the healthcare provider has the new versions.

Talking about advance care planning is not something that only families facing serious illness should do. Everyone should do this. Everyone should think about what matters to them, should tell people what they want, and should put it in writing. In the case of an aging parent, it's especially important because the conversation becomes relevant sooner rather than later. But it's also important because your parent might be more willing to have the conversation if you approach it as something everyone should do, not something that means your parent is dying.

The conversation you keep thinking about having is the one you should have. The time is not next month or next year. The time is this month. Call your parent. Ask them what they value. Listen to what they say. Help them get the documents filled out. Make sure people know what your parent wants. This is not a dark or negative thing. This is actually an act of respect and love toward your parent. You're saying, I want to know what matters to you, and I'm going to make sure those wishes are honored. Your parent will appreciate it. And if something serious happens, you'll be grateful that you had this conversation.

How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation. If you are concerned about a loved one's health or safety, consult with their healthcare provider or contact your local Area Agency on Aging for guidance and support.