Reading the words “palliative care” can have a strong impact and may even cause concern. However, it’s important not to misunderstand their meaning. Like any severe chronic illness, heart failure involves two types of treatment.
The first is well known: so-called “active” care, focused on controlling the disease, stabilizing its progression, and improving quality of life. The second, often less well understood, involves palliative care, which aims to enhance patient comfort and well-being.
Five Key Areas
This article explores five essential aspects of care for people living with advanced heart failure:
Recognizing when the end of life is near
When it becomes clear that someone is likely to live only a few more months, it gives them — and their loved ones — the chance to prepare for a peaceful and dignified end of life, in the place they feel most comfortable, sometimes even at home.
Some signs can signal that the end of life is approaching:
- Gradual weight loss and reduced appetite
- Difficulty swallowing or frequent coughing during meals
- Needing to stay in bed or a chair most of the time
- Sleeping more and being less alert
- Feeling extremely tired and weak
- Falling more often
- Heart failure symptoms that are no longer controlled
- Saying things like “I’ve had enough” or expressing a sense of being worn out
When active treatments no longer help
At a certain point, the focus of care naturally shifts more toward comfort when:
- usual treatments are no longer effective,
- the person feels they no longer want to fight to extend life at any cost,
- or they prefer to cut back or even stop active medications.
A fragile stability
Unlike cancer, severe chronic illnesses such as heart failure don’t allow for a clear timeline or prognosis. Their course is often unpredictable, with periods of relative stability interrupted by acute crises.
People living with advanced heart failure often remain surprisingly functional despite their significant limitations — sometimes for quite a long time. However, their condition remains very fragile, and each acute episode tends to leave them weaker and less independent than before.
As the disease progresses, these crises usually become more frequent. Over time, it becomes harder to regain the same level of functioning after each one.
Finally, even a seemingly minor event — such as a urinary tract infection, a common cold, or another mild illness in otherwise healthy people — can sometimes trigger an irreversible decline in these vulnerable patients.
An important reflection: everything should be discussed
A “terminal crisis” can happen at any time. When the disease starts moving in that direction, it’s essential for the patient and their loved ones to be aware of it and feel free to discuss it openly with healthcare professionals.
With this in mind, the care team supports the patient in making medical decisions that align with their priorities and values. They make sure the patient understands the different possible interventions, along with the risks and benefits of each one.
Indeed, two people with the same illness may have very different goals, leading to very different treatment choices. For example, one patient may wish to stay alive at all costs, even if it means accepting intensive care and a mechanical ventilator, despite the impact on their independence. By contrast, others may prefer to limit hospital stays and focus on preserving quality of life and remaining autonomy, choosing less aggressive treatments. In all cases, medical decisions need to reflect the patient’s own preferences.
It’s also important to remember that the care team is multidisciplinary: it brings together a variety of professionals and places the patient at the center of the discussion — as the main decision-maker in their own care.
Personal and varied goals
Everyone has their own way of expressing what matters most: staying at home, avoiding pain, refusing hospitalizations, or holding on to witness an important life event.
No approach is better than another, as long as it reflects the patient’s true wishes.
Questions to help guide decisions
Certain questions can help patients reflect on their own care goals:
- What do I really know about my illness?
- What are my priorities?
- How far am I willing to go to prolong my life?
- Have I chosen someone who can speak for me if I’m unable to?
The answers to these — and to other, more personal questions — should be at the heart of future medical decisions. That’s why it’s so important to take the time to think about them and clearly share your wishes with the care team.
The level of medical intervention
Once care goals are clearly defined, healthcare professionals record the patient’s preferences in a document called the level of medical intervention. This document becomes part of the medical record, and a copy is usually kept at the patient’s home.
This plan serves as a roadmap, determined by the patient, specifying the intensity of care they would want if their condition worsens. For example, it can state whether or not they accept:
- Cardiopulmonary resuscitation (CPR), which involves chest compressions, electric shocks, or intubation to support breathing with a mechanical ventilator.
- Advanced treatments such as dialysis or other forms of external life support.
- Keeping or stopping the defibrillator function in patients with an implanted defibrillator-pacemaker.
- The use of medical assistance in dying.
There is no rush to decide everything right away
It’s important to understand that these decisions don’t all need to be made immediately. Taking time to reflect, and discussing with loved ones, can help the patient feel more at ease with such major choices. These decisions can always be revisited and adjusted later — nothing is final.
Even if there’s no urgent need to decide, it remains essential to talk about it. For some patients, palliative care above all means improving comfort while continuing active treatment of their heart failure.
But it has to be discussed
Unfortunately, even today, more than half of patients with advanced heart failure have never had an in-depth conversation with their care team about their prognosis. It’s rare to discuss what kind of care they would want in the event of an acute episode, or their wishes regarding CPR.
And yet, nothing is more important at the end of life than respecting the patient’s wishes.
Turning off the defibrillator function of a “super” pacemaker
Some people with heart failure have a pacemaker with an added feature: it can detect and stop potentially fatal heart rhythm problems by delivering an electric shock to the heart. This combined device is called an implantable cardioverter-defibrillator (ICD), or sometimes simply a “defibrillator-pacemaker.”
For a patient who decides they do not want cardiopulmonary resuscitation (CPR), the defibrillator function should also be turned off. This adjustment is very simple: the device can be reprogrammed accordingly.
The device remains in place and continues to provide the pacing function, which can help maintain comfort. It’s important for patients to know that they can choose at any time to turn the defibrillator function off — or back on — depending on their wishes and condition.
Before replacing a pacemaker
When a pacemaker needs to be replaced because the battery is reaching the end of its life, it’s a good time to discuss whether the defibrillator function is still appropriate.
This discussion takes into account the patient’s care goals, their age, how much severe heart failure is affecting their quality of life, and the damage already done to other organs such as the kidneys and liver.
This is not a decision that needs to be made in a rush — it’s an opportunity for thoughtful reflection with the care team and loved ones. If the defibrillator function is no longer desired but pacing remains helpful for comfort, a simple pacemaker can be implanted instead.
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