1. Clinical Knowledge Summaries CKS Heart failure - chronic Primary care management of end stage chronic heart failure. Educational slides based on the CKS topic Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

2. Key learning points and objectives To be able to: oRecognise end stage heart failure (HF). oDescribe what an advance care plan is and why it may be useful. oDescribe what an advance decision (living will) is. oSupport patients with end stage HF by managing end stage symptoms such as breathlessness. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

3. Evidence for managing end stage heart failure Where possible the recommendations for managing end stage heart failure are based on NICE guidance, however There is limited evidence in this area and the best evidence available has been used. This includes in some places expert opinion from review articles. Based on the CKS topic; Heart failure - chronic (Nov 2010).

4. Why is managing end stage HF important? The effects of end stage HF are: oSevere, disabling and have a devastating effect on quality of life. People with HF have a poorer quality of life than those with most other chronic illnesses. Good palliative care can make a large difference to the person at the end of life. Based on the CKS topic; Heart failure - chronic (Nov 2010).

5. Recognising end stage HF People can be regarded as being in end-stage heart failure if they are at high risk of dying in the next 6 months, but It is challenging to predict illness trajectory. More difficult to predict trajectory of illness in severe HF than in cancer. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

6. Recognising end stage HF In general people are likely to be in end-stage HF if: o They respond poorly to treatment and are severely breathless. o A minor decompensation or an additional illness results in acute deterioration and increasingly frequent hospital admissions. o Renal impairment and low blood pressure limit the use of drug treatments. o They are having frequent admissions to hospital with heart failure. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

7. Recognising end stage HF Most common symptoms in the last months of life include: o Chest pain. o Breathlessness. o Fatigue. Other common symptoms include: o Constipation, nausea, loss of appetite, oedema, anxiety, depression, sleeplessness, urinary incontinence, and faecal incontinence. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

8. Advanced planning Ensure the person has an advance care plan (if they wish to have one) and discuss any advance decisions. Opportunities to discuss advanced plans may occur if there is: o A clinical event e.g. admission to hospital. o Deterioration in general well-being. o Change in social circumstances (e.g. moves into a care home). Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

9. Advance care plan An advance care plan should address: o Symptom control and comfort measures. o Anticipatory prescribing of medication to manage exacerbations. o Discontinuing inappropriate interventions. o Needs for psychological and spiritual care. o Care of the family (before and after the person's death). o When, who, and how to call for help when there is a crisis or acute exacerbation and what the options are for management. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

10. Advance care plan An advance care plan should also address the person’s preference regarding: o The setting or location in which they wish to be cared for. o Whether resuscitation should be attempted if they were to have a life-threatening deterioration or cardiac arrest. o Device therapy and deactivation at end of life (e.g. implantable cardioverter-defibrillators). o How to dispose of medicines after death. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

11. Online sources of information General Medical Council o Provides a generic end of life care document published by the General Medical Council. The Gold Standard Framework o Provides multiple tools, tasks and resources which can be adapted within GP practices and community nursing teams, to improve end-of-life care. Planning ahead o Developed by Weston Hospicecare. o Provides a set of leaflets that can be used to facilitate discussions and to document decisions about end-of-life issues. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010).

12. Advance decisions (living wills) Advance decisions allow the person to specify what treatments they would not want and would not consent to (before they have lost the capacity to decide). Clinicians are responsible for finding out if a valid advance decision exists. Based on the CKS topic; Heart failure - chronic (Nov 2010).

13. Advance decisions Advance decisions: o Cannot demand treatments. o Must be respected by clinicians. o Can be withdrawn if the person regains capacity. o Can be made verbally, except for decisions that refuse life-sustaining treatment (e.g. artificial ventilation). o Cannot refuse basic care. Based on the CKS topic; Heart failure - chronic (Nov 2010).

14. When are advance decisions binding? When the person: o Is at least 18 years of age. o Has the necessary mental capacity. o Specifies treatment to be refused, and the applicable circumstances. The advance decision has not been withdrawn. Based on the CKS topic Heart failure - chronic (Nov 2010).

15. When are advance decisions binding? 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. Based on the CKS topic Heart failure - chronic (Nov 2010).

16. Management of end stage HF Optimise treatment o Seek specialist advice if all treatment options have been considered. Co-ordinate care services o A range of health and social care services may be needed to enable the person to continue living at home and to die there if that is their wish. Manage symptoms Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

17. Managing symptoms Breathlessness o Optimize treatment with diuretics. o Fluid restriction (between 1.5 L and 2 L daily). Pain o Often caused by cardiac ischaemia. o Can be relieved with morphine and nitrates. Anxiety, insomnia, and depression o Can be managed with sedatives and hypnotics. Constipation, nausea and loss of appetite o Can be managed with dietary changes and laxatives. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

18. Managing symptoms Urinary incontinence: o Often related to weakness and the use of diuretics. o Can be managed by: Careful timing of diuretic doses. Use of incontinence pads. Insertion of a urethral catheter, or for men, a urisheath. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

19. 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. Stop unnecessary drugs and devices. o Continue necessary drugs by an appropriate route. Ensure that: o Physical and emotional symptoms are well controlled. o Religious and spiritual care is offered if wanted. o Environment and care setting are appropriate. Based on the CKS topic; Heart failure - chronic (Nov 2010), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

20. Summary People can be regarded as being in end-stage heart failure if: oThey are at high risk of dying in the next 6 months, but It is challenging to predict illness trajectory. Ensure the person has an advance care plan (if they want one) and discuss any advance decisions (living wills). Advance decisions allow: oThe person to specify what treatments they would not want and would not consent to (before they have lost the capacity to decide). Clinicians are responsible for finding out if a valid advance decision exists. Co-ordinate care services oA number of services can help the person to continue living at home and to die there if that is their wish. Manage symptoms such as breathlessness, pain, anxiety depression, insomnia, constipation, nausea and urinary incontinence. Seek specialist advice if all treatment options have been considered. Good palliative care can significantly improve quality of life at the end of life.