Heart Failure
Medical Disclaimer: This content is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Information is based on current medical literature and clinical guidelines but may not apply to your specific situation. Individual responses vary based on personal medical history and concurrent conditions. Always consult qualified healthcare providers before starting new treatments and for all medical decisions. Never delay seeking medical care based on content you have read.
These articles provide education to enhance your healthcare partnership. All treatment decisions should involve your healthcare team. Use this knowledge to have informed discussions, not replace medical care.
In Brief
Few parts of a person’s care are more personal than what they would want if they became too unwell to say so themselves. Advance care planning is how those wishes become known ahead of time — set down while a person is well enough to think clearly and say what matters to them. Held early, long before any crisis, it gives a person a voice in decisions that might otherwise be made without them, and spares the people they love from having to guess under pressure. Alongside it sits palliative care, which is not hospice and not only for the end of life: it is help with symptoms and quality of life, provided alongside heart failure treatment at any stage. This final article explains what planning ahead really involves, how to begin, why it belongs early rather than late, and why it is not, in any sense, giving up.
Planning Ahead Is Not Giving Up
The urge to avoid these conversations is completely understandable. Talking about what you would want if things got worse can feel like inviting the worst to happen.
It does not work that way. Advance care planning is not a treatment meant to shorten life, and it does not limit care automatically; its purpose is to make sure that future care reflects a person’s goals and informed choices. Someone who has thought it through has not given up on living — they have made sure their own voice will still be heard at a moment when they might not be able to speak for themselves, deciding while they are well and clear-headed how they want to be cared for, rather than leaving it to chance or to people who do not know them.
Palliative Care: Alongside, Not Instead
The most important thing to clear up is what palliative care really is, because the word frightens people who confuse it with hospice or with giving up on treatment.
It is neither. Palliative care is an approach to improving quality of life, relieving suffering, and helping people make difficult decisions during serious illness — and it is provided alongside ordinary heart failure treatment, at any stage, not only near the end.[5] Much of this support can come from the heart failure team itself, as part of good routine care; this is sometimes called primary palliative care. Specialist palliative care teams add further expertise when symptoms, decisions, emotional or spiritual distress, family needs, or the complexity of the illness become particularly hard.[4] The two are not in competition with cardiac treatment: a person can be receiving comprehensive guideline-directed heart failure treatment, being evaluated for advanced therapies such as transplantation or a mechanical heart pump, and receiving palliative care all at the same time. In a randomized trial, adding a palliative care team to usual care for people with advanced heart failure improved quality of life, depression, anxiety, and spiritual well-being — it helped people feel better while their cardiac treatment continued.[2] Palliative care is not what a person is given when nothing more can be done; it is what helps make everything else more bearable.
Why the Conversations Belong Early
Heart failure follows an unusual and difficult course. Unlike some illnesses that decline along a fairly steady slope, heart failure tends to move in fits and starts — long stretches of stability, broken by episodes of sudden worsening, often followed by partial recovery. A person can be seriously ill one month and back to a reasonable baseline the next; the illness can also, at times, end suddenly and without much warning.[3]
That unpredictability is exactly why these conversations should happen early, while a person is well, rather than being saved for a “clear ending” that heart failure rarely provides. Waiting for the obvious moment often means it never comes cleanly — or it comes during a crisis, when a person is too unwell to take part and their family is left to guess. Held early and revisited over time, these conversations let a person shape their care while they can think clearly and speak for themselves. Early planning is not premature; given how heart failure behaves, it is simply the only dependable time to do it.[1]
How to Start the Conversation
You do not need to arrive with every answer, or to raise everything at once. The single most useful move is often just to tell the care team you would like to talk about what may lie ahead — you can start it yourself, and you do not have to wait to be asked. A few plain sentences are enough to open the door:
- “I want to understand what may happen if my heart failure gets worse.”
- “If I become too sick to speak for myself, I want my family and care team to know what matters to me.”
- “Can you help me understand what CPR, a breathing machine, or intensive care would realistically mean in my situation?”
- “Who should I name to make decisions if I cannot?”
From there, the planning becomes a set of concrete, manageable steps — none of which has to be finished in a single visit.
What Planning Involves
It begins with naming what matters most, which is deeply personal. For one person it is length of life at almost any cost; for another it is time at home, or independence, or avoiding particular treatments, or simply comfort. There are no wrong answers here, only honest ones.
Those priorities are then written down, so they carry weight when the moment comes. An advance directive records a person’s wishes about future care, and naming a healthcare proxy — a trusted person allowed to make decisions if one cannot — makes sure someone who knows those wishes can speak for them. It helps to be clear about that person’s job: a proxy’s role is to represent the person’s wishes and values as faithfully as they can, not to choose what they themselves would want. (The exact documents and terms differ from place to place, so a care team or a local resource can point to what applies where a person lives.) A document by itself is not enough, though: often the single most useful step is simply telling that trusted person, in plain words, what you would and would not want.
Some of the specific decisions in heart failure are worth understanding rather than just answering. Choices about CPR or a breathing machine are not a simple choice between “care” and “no care.” What each would realistically offer depends on a person’s overall health, whether the immediate problem can be reversed, the severity of the heart failure, frailty, and what recovery would really look like. A useful conversation asks not only “Would I want this?” but “What outcome is realistically possible for me, and would that outcome be acceptable to me?” The care team can help think it through.
It also helps to know that these choices do not have to be all-or-nothing. Preferences can depend on the situation: a person might accept a temporary breathing machine for a problem that can be fixed, but not prolonged life support if a return to an acceptable quality of life is very unlikely. You do not have to decide that you always want, or never want, a given treatment — what you want can depend on the chance of recovery and on what recovery would mean.
One decision is specific to the implanted defibrillator of Article 8. Near the end of life, when comfort has become the goal, many people choose to have its shocking function switched off — a simple, painless adjustment that does not cause or hasten death; it only prevents distressing shocks in a person’s final hours, when they would no longer help.[1] Turning off the shocks does not necessarily mean turning off the device’s pacing or resynchronization functions, which are separate; the device team can explain exactly which therapies are being changed. None of these choices is final — all can be revisited as circumstances and priorities change.
What These Conversations Do for Families
The people around a person carry much of the weight of a serious illness, and planning ahead helps them too — in practical, not sentimental, ways. Talking openly gives family members permission to ask hard questions before a crisis forces them. It makes clear who is meant to speak if the person cannot, so no one is left wondering. It brings any disagreement into the open early, while it can be worked through calmly. And it means that if a decision ever has to be made on someone’s behalf, the people who love them are guided by what that person wanted — which is a lighter burden to carry than a guess.
Goals of Care: The Compass
Everything in this series — the medications, the fluid management, the devices, the advanced therapies — is a means to an end. Goals-of-care conversations are how a person defines the end those means are meant to serve.
As heart failure progresses, decisions increasingly turn on priorities that only the person can set: length of life against quality of life, aggressive treatment against comfort, time in the hospital against time at home. This is the heart of what clinicians call shared decision-making — the person and the care team choosing together, from the medically sensible options, the one that best fits what the person wants. When a person’s goals are clear and known, each choice can be measured against them, so care stays aligned with what the person truly wants rather than drifting toward whatever is technically possible.
Palliative care can run alongside disease-directed treatment at many points in a serious illness. Hospice is a specific form of comprehensive, comfort-focused care for people who are approaching the end of life and meet certain eligibility requirements — in many systems, a clinical expectation of roughly six months or less if the illness runs its usual course, once treatments aimed at prolonging life are no longer the goal. The exact rules and services vary by healthcare system and location. Choosing that focus, when it is right for the person, is care directed at what matters most to them.
Clinical Bottom Line
Advance care planning is not about preparing to die; it is about making sure care reflects what matters most to the person, and held early it gives them a voice while sparing their family from guessing in a crisis. It is not intended to shorten life or to limit treatment automatically. Palliative care is not hospice and not only for the end — it is help with symptoms and quality of life provided alongside cardiac treatment at any stage, much of it by the heart failure team itself, with specialist teams added when the illness or the decisions become especially hard. Because heart failure moves unpredictably, with no reliable “clear ending,” these conversations belong early, while a person is well. Planning means naming priorities, recording them through an advance directive and a healthcare proxy, telling that person what you want, and understanding specific decisions — about resuscitation, a breathing machine, and, near the end of life, a defibrillator’s shocks — as choices that can depend on the chance and meaning of recovery. As the illness progresses, a person’s own goals become the measure against which every treatment choice is weighed.
The Series Comes Full Circle
This is the last of the twelve articles. The series began with a misunderstood word — “failure” — and the reassurance that it does not mean what people fear. It ends with the most personal decisions of all placed in the hands of the person living the condition. Between the two lies everything that makes heart failure navigable: understanding what it is, why it develops, how it is tested and treated, and how it is lived with over years. Heart failure is serious, but it is not defined by the day of diagnosis. It is defined by the years that follow — years shaped, in ways large and small, by a person and their care team working together.
Key Terms
Advance care planning: The process of thinking through and recording one’s wishes for future medical care, so that care reflects a person’s priorities even if they cannot speak for themselves.
Palliative care: Care focused on relieving symptoms, improving quality of life, and helping with difficult decisions during serious illness — provided alongside ordinary treatment at any stage. Much can be delivered by the heart failure team (primary palliative care); specialist teams help with harder problems (specialty palliative care).
Goals of care: A person’s own priorities for their treatment — such as length of life, quality of life, comfort, or independence — used as the measure against which medical decisions are weighed.
Shared decision-making: A process in which a person and their care team choose together, from the medically reasonable options, the one that best fits the person’s goals and values.
Advance directive: A document recording a person’s wishes about future medical care. The exact form and legal terms vary by location.
Healthcare proxy: A trusted person authorized to make medical decisions on someone’s behalf if they become unable to do so, charged with representing that person’s wishes rather than their own; known by different names in different places.
Defibrillator deactivation: Turning off the shocking function of an implanted defibrillator — a simple, painless adjustment that does not cause or hasten death — when the goal of care has shifted toward comfort near the end of life. Pacing and resynchronization functions are separate and are not necessarily affected.
Hospice: A specific model of comprehensive, comfort-focused care for people approaching the end of life who meet eligibility requirements; rules and services vary by healthcare system and location.
References
- Heidenreich PA, Bozkurt B, Aguilar D, et al. 2022 AHA/ACC/HFSA Guideline for the Management of Heart Failure. Circulation. 2022;145:e895–e1032. https://doi.org/10.1161/CIR.0000000000001063
- Rogers JG, Patel CB, Mentz RJ, et al. Palliative Care in Heart Failure: The PAL-HF Randomized, Controlled Clinical Trial. J Am Coll Cardiol. 2017;70(3):331–341. https://doi.org/10.1016/j.jacc.2017.05.030
- Fang JC, Ewald GA, Allen LA, et al. Advanced (Stage D) Heart Failure: A Statement From the Heart Failure Society of America Guidelines Committee. J Card Fail. 2015;21(6):519–534. https://doi.org/10.1016/j.cardfail.2015.04.013
- Chuzi S, Abshire Saylor M, Allen LA, et al. Integration of Palliative Care into Heart Failure Care: Consensus-Based Recommendations from the Heart Failure Society of America. J Card Fail. 2025;31(3):559–573. https://doi.org/10.1016/j.cardfail.2024.10.435
- Graven LJ, Kitko L, Abshire Saylor M, et al. Palliative Care and Advanced Cardiovascular Disease in Adults: Not Just End-of-Life Care: A Scientific Statement From the American Heart Association. Circulation. 2025;151(21):e1030–e1042. https://doi.org/10.1161/CIR.0000000000001323
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