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What to do in advanced heart failure / terminal heart failure?

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What to do in advanced heart failure / terminal heart failure?

Heart failure is often a chronic and progressive disease, characterized by an unpredictable and variable course per patient. As the disease progresses, the symptom burden increases, often with a complex contribution of comorbidities.

It is important to pay attention to the assessment and discussion of the prognosis and possible treatments early in the course of the disease. The patient's wishes must also be actively questioned.

In the event of clinical deterioration of heart failure, the treating cardiologist must assess timely whether there is an indication for advanced heart failure therapies with a left ventricular assist device  (LVAD) and/or heart transplantation.  A thorough  evaluation must be conducted to determine whether the patient could be a candidate for advanced therapies and referred to a tertiary heart failure clinic.

It is the task of the cardiologist to recognize the stage of advanced heart failure through multiple criteria, based on symptoms, clinical evolution, echocardiography, exercise test (cycloergospirometry, CPET, VO2max),...

The most essential signs for recognizing advanced heart failure are :

  • Persistent severe symptoms of heart failure and a low exercise capacity (NYHA class III-IV) despite optimal therapy
  • Multiple hospitalizations per year for heart failure
  • Persistent signs of fluid retention refractory to maximal therapy
  • Having to taper off heart failure therapy due to symptomatic hypotension
  • Increasing dysfunction of the heart with low cardiac output
  • Increasing multi-organ failure (renal insufficiency, liver failure and ascites, etc.)
  • A negative answer to the “surprise question”: Would you be surprised if your patient dies in the next 12 months?

If there is a progression of the disease and a poor prognosis without curative therapies, it is necessary to discuss any therapy limitations in a timely manner and communicate care goals (early care planning or DNR code). The decisions made must then be well documented in the medical file.

If the patient is no longer eligible for advanced heart failure therapies, the patient enters the stage of end stage or terminal heart failure and prognosis is often reduced to several months to a maximum of one or two years.

End stage heart failure is often recognized late and palliative care is often only applied when the patient is near death. This sometimes leads to unnecessary suffering, unwanted hospitalizations and avoidable ICD shocks.

At the point of recognizing end stage or terminal heart failure the treating care team should focus on comfort therapy.

Ideally, the following aspects are evaluated:

1. Discussing limitations in care and clear documentation of this in the medical record.

2. Review medication

  1. Diuretic and heart failure therapy should be maintained for as long as possible to control dyspnea and fluid retention. This is also important to maintain comfort, especially if palliative sedation is not yet used.
  2. In case of symptomatic hypotension, therapy should be discontinued:
    • It is best to first discontinue antihypertensive medications that are not relevant to heart failure therapy (e.g. calcium channel blockers, alpha blockers, etc.).
    • In case of persistent symptomatic hypotension, it is best to reduce the dose of heart failure therapy. With HFrEF the aim is to continue the 4 classes of medicines for as long as possible. A lower dose of an ACE inhibitor/ARB / ARNI with a beta-blocker and a MRA is better than a high dose of either of these.
    • In case of symptomatic hypotension with severe renal insufficiency and/or hyperkalemia, it is best to first reduce the ACE inhibitor/ARB / ARNI and/or the MRA and, if necessary, discontinue these drugs.
    • In case of symptomatic hypotension with bradycardia and/or low cardiac output, it is best to first reduce the beta-blocker and, if necessary, to discontinue the beta-blocker therapy.
  3. The indication of all other medications must be reevaluated. Medication that is of little use is best discontinued, partly to limit the number of pills per day. For example statins, supplements, bisphosphonates,…
  4. In case of persistent discomfort and shortness of breath, it is best to start with subcutaneous administration of morphine as comfort therapy, possibly in combination with a benzodiazepine, possibly in consultation with palliative home support. If necessary, in the event of difficult symptom control and insufficient comfort, admission to hospital or to a palliative unit can be planned, and if necessary palliative sedation started.

3. Turn off anti-tachytherapy of the internal defibrillator (ICD) if necessary

  • ICD shocks due to malignant arrhythmia only cause unnecessary suffering in the terminal phase.
  • If it is decided that resuscitation is no longer desirable, anti-tachytherapy (anti-tachy pacing and shocks) by the ICD should be deprogrammed. This option is best discussed with the patient and family in a timely manner in case of deterioration of the disease.
  • This is done by the cardiologist, preferably via the consultation, or in case of urgency (recurrent shocks) if necessary via the emergency department. If this has not been performed and the patient still receives unwanted shocks from the ICD, a magnet should be attached to the top of the ICD (e.g. with adhesive tape). When the magnet is removed, the ICD anti-tachytherapy will be reactivated and quickly defibrillate (max. 6 times in immediate succession if the arrhythmia is not stopped).
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4. Multidisciplinary approach

A multidisciplinary approach is necessary with palliative support at home or via the palliative care unit according to the wishes of the patient and relatives, with attention to pain control, psychological and spiritual support if necessary.

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