Living with CHF — the daily management reality

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.

Your parent has had two heart attacks already. They've had stents placed. They've had medications adjusted multiple times. The cardiologist is talking about advanced heart failure now. And they're suggesting that maybe it's time to think about what your parent actually wants from their remaining care. Not cure—the heart is too damaged for that. But what kind of life do they want to live in their remaining time? What interventions make sense? What interventions are just prolonging dying without prolonging living?

This is one of the hardest conversations you'll have. It's harder because it involves acknowledging that your parent is not going to recover from this. It's harder because it involves talking about death. It's harder because you might be in genuine disagreement with your parent about what they want, or you might be disagreeing with your siblings, or you might feel like no matter what you choose you're making a bad decision. It's hard because your parent might not want to have the conversation at all.

But this conversation, as hard as it is, is one of the most important conversations about your parent's care you'll ever have. Because when you understand what your parent actually values and what they actually want, you can make decisions that align with who they are, not decisions that just keep them alive without regard for quality of life.

When Treatment Becomes Burden Rather Than Benefit

There's a point, sometimes gradual and sometimes sudden, where the treatments meant to help your parent are causing more suffering than relief. Your parent is in the hospital frequently because they retain fluid and need diuretics. They're exhausted from the multiple medications. They can barely walk because they're so weak. They're confused from medication interactions. They spend their days in pain or discomfort. The interventions that were supposed to extend their life have become the definition of their life.

This is different from early heart disease where treatment genuinely improves quality of life. When your parent was having chest pain and an intervention opened an artery so they could walk without pain, that intervention gave them something. It gave them function. It gave them relief. It gave them the ability to do things they wanted to do. But later in the disease course, when your parent has had multiple interventions and their heart is still failing, when they're having complications from the treatments themselves, when they're spending most of their time dealing with healthcare rather than living, the equation changes.

The point where treatment becomes burden varies for different people. Some people want every intervention possible no matter the burden. Some people reach a point where they don't want any more hospitals, any more procedures, any more fighting. Some people are somewhere in between. The key is knowing what your parent actually wants.

Some signs that treatment might be becoming burden rather than benefit: your parent is talking about being tired of it all, tired of being sick, tired of doctor appointments, tired of medications. Your parent's quality of life has gotten so low that the prospect of living longer doesn't appeal to them. Your parent is having side effects from medications that are affecting how they think or feel. Your parent is unable to do the things that make life worth living to them—spending time with family, pursuing hobbies, engaging in faith or spirituality, whatever it is that gives their life meaning. Your parent's heart function keeps deteriorating despite the maximum doses of all the medications meant to help.

This doesn't mean treatment should stop. But it means the goals of treatment might need to shift. Instead of the goal being "cure the heart failure" or "extend life as long as possible," the goal might become "keep my parent comfortable" or "preserve their ability to think clearly" or "let them spend time with family" or some other goal that your parent actually cares about.

Having the Conversation

The conversation about goals of care needs to happen in three places: with your parent, with their doctor, and with your family. Each conversation is different and each one is important.

The conversation with your parent is the most important one. This is where you need to understand what your parent actually values. Not what they think they should value. Not what they think you want them to value. But what they actually care about. Some questions that might help start this conversation: What's most important to you in your life right now? What would a good day look like? What are you afraid of happening? If you knew you didn't have much time left, what would you want to focus on? Would you want to know if your doctors thought you were dying, or would you prefer not to know? What kind of medical care would feel like it's helping, and what kind would feel like you're being forced to do things?

These are hard questions and you might not ask them perfectly. You might fumble. You might cry. Your parent might not want to answer. But if you can have some version of this conversation, even if it's incomplete, it's better than not having it at all.

Your parent might say they want to keep fighting, that they want every possible intervention, that they want to try to live as long as possible. That's a completely legitimate choice. If that's what your parent genuinely wants, then that's the direction you support, even if you think it's exhausting or unwise. Your parent is the one living in their body. Your parent is the one who knows what their life feels like to them.

Your parent might say they're tired, that they don't want any more hospitals, that they want to focus on comfort. That's also completely legitimate.

Your parent might be somewhere in between, wanting some interventions but not others, wanting to try certain things but wanting limits on how long that trying continues.

Once you know what your parent actually wants, or as close to that as you can get, the conversation with the doctor becomes possible. You tell the doctor what your parent's values are and what your parent wants their care to focus on. A good doctor will work with you to create a care plan that aligns with those values. A doctor who doesn't want to have this conversation or who insists that treatment must continue regardless of your parent's wishes is not serving your parent well.

The conversation with your family—siblings, spouse, other people involved,is complicated because you might not all agree. One sibling might think everything possible should be tried. Another might think your parent should be allowed to stop treatment. Your parent's spouse might have different wishes than your parent. These disagreements need to happen, but they should happen with honesty and respect for the fact that you all care about your parent and you're all trying to do what's right.

Shifting to Comfort-Focused Care

When the goal of treatment shifts from cure to comfort, the medical approach changes. Medications that were meant to extend life might be discontinued. For example, a statin that was lowering cholesterol to prevent future cardiac events might be stopped because your parent won't live long enough for that benefit. A blood pressure medication might be stopped because slightly lower blood pressure isn't worth the side effects your parent is experiencing.

But medications that provide comfort,pain medications, anti-nausea medications, anti-anxiety medications,become more important. The focus shifts to alleviating suffering rather than extending life. This sounds simple but it's actually a major shift in the medical mindset.

Comfort-focused care might mean your parent can still go to the hospital if they want to, but the reason for going changes. Instead of going for a procedure to fix their heart, they go to get medication adjusted for pain, or to get relief from fluid retention, or to clarify what's happening with their health if that clarity is something they want. They might not go to the hospital at all.

Comfort care might happen at home or in a hospice facility, depending on what your parent and your family prefer and what's available. The focus becomes making your parent comfortable and supported, making sure they're not in pain, making sure they can be with the people who matter to them, making sure any unfinished business gets attended to if they want to attend to it.

Comfort care doesn't mean your parent is neglected or abandoned. It means the nature of the care changes. A nurse might visit regularly. A doctor might be available for phone consultations. Medications are adjusted. Your parent is listened to. But the machine-like quality of endless testing and interventions stops. The focus becomes the person, not the disease.

The Device Question

If your parent has an ICD (implantable cardioverter-defibrillator), a device that can shock the heart if dangerous rhythms occur, or a pacemaker, or a LVAD (left ventricular assist device), there's an additional conversation that might need to happen. These devices have their own settings and their own complexity. They can be turned off.

This sounds shocking but it's a completely legitimate and sometimes necessary decision. If your parent is dying and the ICD keeps shocking them back into consciousness every time they're about to slip away peacefully, if the LVAD is keeping them alive in a state of suffering, if the pacemaker is preventing a natural death your parent has accepted and wants to experience,turning off the device becomes an option.

Turning off a device feels like something very different from stopping medications. It feels more active, more like directly causing death rather than allowing death to occur naturally. But medically, it's similar to any other decision to stop a treatment. The device was meant to help. If it's no longer helping, if it's causing more harm than good, it can be turned off.

Some religious traditions have specific teachings about this. Some people feel strongly that you shouldn't turn off a device because that's actively ending life. Others feel strongly that a device that's prolonging suffering has become a burden and should be turned off. These are legitimate disagreements and they need to be discussed with your parent's doctor and potentially with spiritual advisors or ethicists.

What's important is that this isn't a decision made in a vacuum. It's made with your parent's input if they're able to give it. It's made with the doctor's understanding of what's happening. It's made with careful thought about what your parent actually wants.

The Permission to Let Go

One of the hardest things to communicate to someone in your situation is that it's actually okay to choose comfort over cure. It's okay to choose quality over quantity. It's okay to choose a shorter, better life over a longer, worse one. You don't have to keep fighting for your parent to live as long as possible. You don't have to feel guilty for not pursuing every possible intervention.

Your parent might feel this guilt too. They might feel like they're giving up if they stop fighting. They might feel they're burdening their family if they're not pursuing aggressive treatment. They might need permission from you, from their doctor, from themselves to let go. Giving that permission is one of the hardest and most loving things you can do.

You can tell your parent: I love you. I want you to be comfortable. I don't want you to suffer in pursuit of living longer. If you're tired of fighting, it's okay to stop. If you want to focus on enjoying your remaining time rather than extending it, that's okay. You don't have to keep going for anyone else. You get to choose what happens to your own body, your own life.

And you can mean it. Because sometimes the kindest thing you can do for someone you love is help them exit gracefully rather than extend suffering indefinitely.

The death of your parent is going to happen eventually. You can't prevent it. What you can control is how your parent experiences their remaining time. You can control whether they spend it in hospital rooms getting procedures or at home with people they love. You can control whether the focus is cure or comfort. You can control whether your parent's wishes are honored or overridden. These choices matter enormously.

The conversation about end-of-life care is painful and hard. But it's also an act of deep care. It's saying to your parent: I want to know what you really want. I want to help you get that. I want your remaining time to reflect your values and your wishes. That's love, even when it involves accepting death.

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 end-of-life care or goals of treatment, consult with their healthcare provider, a palliative care specialist, or your local hospice organization for guidance and support.