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Heart failure - chronic - Management
How should I ensure appropriate advance planning for people with end-stage heart failure?

  • Ensure the person has an advance care plan (if they wish to have one) and discuss any advance decisions.
    • Opportunities to discuss end-of-life issues and review the advance care plan can arise when there is a clinical event or deterioration, or when there is a change in social circumstances, such as a move into a care home.
  • An advance care plan should address:
    • Symptom control and comfort measures.
    • Anticipatory prescribing of medication to manage exacerbations.
    • Discontinuing inappropriate interventions.
    • Needs for psychological and spiritual care.
    • Care of the family (before and after the person's death).
    • When, who, and how to call for help when there is a crisis or acute exacerbation, and what the options are for management.
      • The benefits of hospital admission can be difficult to predict, as response to treatment is often unpredictable and deterioration in symptoms may be due to causes other than heart failure.
    • The person’s preferences regarding:
      • The setting or location in which they wish to be cared for.
      • Whether resuscitation should be attempted if they were to have a life-threatening deterioration or cardiac arrest. This information should be made available to out-of-hours and ambulance services.
    • The person's preference for device therapy and deactivation at end of life (for example implantable cardioverter-defibrillators).
    • How to dispose of the person's medicines after their death.
  • Online resources may be useful when planning the management of end-of-life issues; these include:
    • NHS Heart Improvement — this website provides downloadable guidance on end of life care in people with heart failure. It is endorsed by the End of Life Care Programme. It discusses the definition of end of life, including clinical features, and gives detailed information about device management.
    • www.gmc-uk.org — this website provides a generic end of life care document published by the General Medical Council. This provides guidance on the treatment and care towards the end of life and provides a framework for good practice when providing treatment and care for patients who are reaching the end of their lives.
    • www.endoflifecareforadults.nhs.uk — the NHS National End of Life Care Programme supports the implementation of the UK Department of Health's End of Life Care Strategy by sharing good practice in collaboration with local and national stakeholders. The website is aimed at health and social care staff and provides information on a variety of aspects relating to end-of-life care. This includes more than 100 case studies that highlight good practice.
    • Preferred priorities for care — this document is a combined information leaflet and form that the person and their carers can use to plan and document their preferred priorities for care.
    • Planning ahead — this document, developed by Weston Hospicecare with patients and palliative care professionals, is a set of leaflets that can be used to facilitate discussions and to document decisions about end-of-life issues. The leaflets are entitled:
      • Preferred priorities for care — your advanced wishes.
      • Putting your affairs in order and making a will.
      • Appointing someone to make decisions for you in the future.
      • Writing an advance decision.
    • The Liverpool Care Pathway for the Dying Patient —  provides a national framework for caring for people in the terminal phase of a disease. It aims to improve professional communication and documentation and to integrate national guidelines into clinical practice.
    • The Gold Standard Framework — provides multiple tools, tasks and resources, which can be adapted within GP practices and community nursing teams, to improve end-of-life care for people with any end-stage illness.
  • For more information, see the CKS topic on Palliative cancer care - general issues.

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