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End-stage heart failure

Covers the management of people with end-stage heart failure, including advanced care planning and symptom management


When should I suspect end-stage heart failure?

  • People can be regarded as being in end-stage heart failure if they are at high risk of dying within the next 6–12 months.
  • Common symptoms in end-stage heart failure include:
    • Pain.
    • Breathlessness.
    • Persistent cough.
    • Fatigue.
    • Limitation of physical activity.
    • Depression and anxiety.
    • Constipation.
    • Loss of appetite and nausea.
    • Oedema.
    • Insomnia.
    • Cognitive impairment.
  • Predicting the illness trajectory can be difficult. 
  • Indicators of people likely to have end-stage heart failure include:
    • Frequent hospital admissions.
    • Poor response to treatment and severe breathlessness at rest (New York Heart Association class IV).
    • Presence of cardiac cachexia.
    • Low serum albumin.
    • Progressive deterioration in estimated glomerular filtration rate (eGFR) and hypotension limiting the use of drug treatments.
    • Acute deterioration and increasingly frequent hospital admissions from comorbid conditions (such as a chest infection).
    • Poor quality of life and dependence on others for most activities of daily living.
    • People who are clinically judged to be close to the end of life.
  • The Prognostic Indicator Guidelines can be used to estimate prognosis. It is part of the Gold Standards Framework, which aims to optimize the care of people nearing the end of life who are looked after by primary care teams.
  • For further information, see the section on Assess prognosis in the CKS topic on Palliative care – general issues.

Basis for recommendation

How should I manage a person with end-stage heart failure?

  • Liaise with a cardiologist if there is uncertainty about the use of further treatments, and to make sure all treatment options have been considered (including planned deactivation of implantable cardioverter-defibrillators [ICDs]), if appropriate.
  • Explore the person’s understanding and provide an appropriate explanation of the situation including realistic goals of care with the person and their family/carers.
    • Goals of care should be evaluated repeatedly during disease progression, anticipating that people may frequently want to modify their decisions.
  • Involve and coordinate care with the multidisciplinary team (MDT) which may include community nurses, heart failure specialist nurses, a palliative care team, occupational therapists, physiotherapists, dietetics, out-of-hours services, and hospice care.
  • Review the need for medication and provide symptom relief:
  • Ensure the person has an advance care plan (if they wish). It should be reviewed regularly and should address:
    • Anticipatory prescribing of medication to manage symptoms and when, who, and how to call for help when there is a crisis or acute exacerbation.
    • Needs for psychological and spiritual care.
    • Care of the family (before and after the person’s death).
    • Information on prognosis in a sensitive, open and honest manner.
    • The person’s preferences regarding the location in which they wish to be cared for and whether resuscitation should be attempted if they were to have a life-threatening deterioration. This information should be made available to out-of-hours and ambulance services.
  • Discuss advance decisions (also called advance directives or living wills) which allow the person to specify (before they have lost capacity to decide) what treatments they would not want and would not consent to.
  • For information regarding available resources for healthcare professionals caring for people receiving end-of-life care, see the section on help and advice in primary care in the CKS topic on Palliative care – general issues.

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