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Heart failure - chronic - Management
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How do I recognize end-stage heart failure?
- People can be regarded as being in end-stage heart failure if they are at high risk of dying within about 6 months. However, predicting the illness trajectory is difficult; it is much harder in severe heart failure than in cancer.
- Liaise with a cardiologist if there is uncertainty, and to make sure all treatment options have been considered.
- People are likely to be in end-stage heart failure if:
- They respond poorly to treatment and are severely breathless (and if measured, the left ventricular systolic ejection fraction is less than 20%).
- A minor decompensation or an additional illness (such as a respiratory tract infection) results in acute deterioration and increasingly frequent hospital admissions.
- Renal impairment and low blood pressure limit the use of drug treatments.
- They are having frequent admissions to hospital with heart failure.
- The most distressing symptoms in end-stage heart failure are pain, breathlessness, low mood, anxiety, and urinary incontinence.
- The most common symptoms experienced by people with heart failure in the last months of life are pain, breathlessness, and fatigue. Other common symptoms and problems include constipation, nausea, loss of appetite, oedema, anxiety, depression, sleeplessness, urinary incontinence, and faecal incontinence. Cognitive impairment may also effect some people.
Basis for recommendation
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.
Basis for recommendation
What information can I give to people with end-stage heart failure about advance decisions?
- Advance decisions (also called advance directives or living wills):
- Allow the person to specify (before they have lost the capacity to decide) what treatments they would not want and would not consent to.
- Cannot demand treatments.
- Must be respected by clinicians.
- Can be withdrawn if the person regains capacity.
- Can be made verbally, except for decisions that refuse life-sustaining treatment (such as artificial ventilation), which must be written, signed, and witnessed.
- Cannot refuse basic care, such as the provision of warmth, shelter, and hygiene. This includes food for eating and water for drinking, but not artificial nutrition and hydration.
- Clinicians are responsible for finding out if a valid advance decision exists.
- An advance refusal of treatment is binding if:
- The person making the advance decision was at least 18 years of age, and had the necessary mental capacity.
- It specifies treatment to be refused, and the applicable circumstances.
- It has not been withdrawn.
- Nobody has subsequently been given power of attorney to make treatment decisions on the person's behalf.
- The person making the advance decision has not subsequently given reason to believe that they have changed their mind.
- The legal framework for advance decisions is provided by the Mental Capacity Act 2005, which also provides for resolution of disputes and disagreements about advance decisions.
- The Mental Health Act 2007 introduced safeguards on the deprivation of liberty into the Mental Capacity Act 2005.
Basis for recommendation
How should I manage someone with end-stage heart failure?
- Where palliative care for people with heart failure is similar to that for people with cancer, this overview provides links to CKS topics on the management of specific aspects of palliative care in people with cancer. More specific advice relating to people with heart failure can be found in such sources as the Merseyside and Cheshire Specialist Palliative Care and Cardiac Clinical Networks (see www.mccn.nhs.uk (pdf)).
- Optimizing treatment
- Seek specialist opinion to ensure that all relevant treatment options (including drugs and devices) have been considered and optimized. Because the symptoms of heart failure tend to fluctuate, it can be difficult to assess when people are in end-stage heart failure.
- Coordination of care services
- People with end-stage heart failure may require coordination of a diverse range of health and social care services to enable them to continue living at home and to die there if that is their wish. These services include primary care, community nursing, domiciliary care, social care, community pharmacy, occupational therapy, physiotherapy, dietetics, out-of-hours services, and hospice.
- Managing symptoms
- Breathlessness
- Optimize standard treatment with diuretics, fluid restriction (to between 1.5 L and 2 L daily), and avoidance of excessive consumption of salt. If this is ineffective, consider prescribing an opioid, a benzodiazepine, or oxygen.
- For information on when and how to prescribe opioids, benzodiazepines, and oxygen, see the CKS topic on Palliative cancer care - dyspnoea.
- Pain
- Anxiety, insomnia, and depression can be managed with sedatives and hypnotics.
- Constipation, nausea, and loss of appetite can be managed with dietary changes and laxatives.
- Urinary incontinence is often related to weakness and the use of diuretics. It can be managed by careful timing of diuretic doses; use of incontinence pads; and insertion of a urethral catheter, or for men, a urisheath.
- Managing an acute exacerbation of heart failure
- Admission to hospice or hospital is an option that should (ideally) be preplanned and reevaluated as the person's condition develops.
- Assess for and treat any exacerbating factors.
- Managing the terminal phase
- Explore the person's understanding; provide appropriate explanation of the situation to the person and their family and carers.
- Set realistic goals.
- Ensure that religious and spiritual care is offered if wanted.
- Ensure that the environment and care setting are appropriate. Consider involving occupational therapy to meet equipment needs and palliative care services.
- Stop unnecessary drugs and devices (such as implantable cardioverter-defibrillators). Continue necessary drugs by an appropriate route.
- Ensure that physical and emotional symptoms are well controlled.
- For more information, see the CKS topic on Palliative cancer care - general issues.
Basis for recommendation
These recommendations are in line with guidelines from the National Institute for Health and Clinical Excellence (NICE) [NICE, 2004; National Clinical Guideline Centre for Acute and Chronic Conditions, 2010] and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
Specialist
- NICE defines the term 'specialist' as a physician with sub-speciality interest in heart failure (often a consultant cardiologist) who leads a specialist multidisciplinary heart failure team of professionals with appropriate competencies from primary and secondary care. The team will involve, where necessary, other services (such as rehabilitation, tertiary care, and palliative care) in the care of individual persons.
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