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 (May 2015), 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:
Recognise end stage heart failure (HF).
Describe what an advance care plan is and why it may be useful.
Describe what an advance decision (living will) is.
Support patients with end stage HF by managing end stage symptoms such as breathlessness.
Based on the CKS topic; Heart failure - chronic (May 2015), 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 (May 2015).

4. Why is managing end stage HF important?
The effects of end stage HF are:
Severe, 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.
Presenter notes:
This information is taken from the British Heart Foundation Scotland and Scottish Partnership for Palliative Care (2008) Living and dying with advanced heart failure: a palliative care approach. Scottish Partnership for Palliative Care.
[Free Full-text (pdf)]
Based on the CKS topic; Heart failure - chronic (May 2015).

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.
Presenter notes
These recommendations are based on published expert opinion [Stewart and McMurray, 2002] and guidelines published by the Heart Failure Society of America [Heart Failure Society of America, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), 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:
They respond poorly to treatment and are severely breathless.
A minor decompensation or an additional illness 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.
Presenter notes
These recommendations are based on published expert opinion [Stewart and McMurray, 2002] and guidelines published by the Heart Failure Society of America [Heart Failure Society of America, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), 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 worsening:
Chest pain.
Breathlessness.
Fatigue.
Other common symptoms include:
Constipation, nausea, loss of appetite, oedema, anxiety, depression, sleeplessness, urinary incontinence, and faecal incontinence.
Presenter notes
These recommendations are based on published expert opinion [Stewart and McMurray, 2002] and guidelines published by the Heart Failure Society of America [Heart Failure Society of America, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), 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:
A clinical event e.g. admission to hospital.
Deterioration in general well-being.
Change in social circumstances (e.g. moves into a care home).
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004; National Clinical Guideline Centre for Acute and Chronic Conditions, 2010], guidance published by the General Medical Council [GMC, 2010], and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
Based on the CKS topic; Heart failure - chronic (May 2015), 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:
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.
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004; National Clinical Guideline Centre for Acute and Chronic Conditions, 2010], guidance published by the General Medical Council [GMC, 2010], and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
Based on the CKS topic; Heart failure - chronic (May 2015), 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:
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.
Device therapy and deactivation at end of life (e.g. implantable cardioverter-defibrillators).
How to dispose of medicines after death.
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004; National Clinical Guideline Centre for Acute and Chronic Conditions, 2010], guidance published by the General Medical Council [GMC, 2010], and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
Based on the CKS topic; Heart failure - chronic (May 2015), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

11. Online sources of information
General Medical Council
Provides an end of life care document
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.
Planning ahead
Developed by Weston Hospicecare.
Provides a set of leaflets that can be used to facilitate discussions and to document decisions about end-of-life issues.
Presenter notes
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.
Planning ahead (pdf)  ( )
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 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.
The National Gold Standards Framework (GSF) Centre in End of Life Care is the national training and coordinating  centre for all GSF programmes, enabling  generalist frontline staff to provide  a gold standard of care for people nearing the end of life. GSF improves the quality, coordination and organisation of care leading to better patient outcomes in line with their needs and preferences and greater cost efficiency through reducing hospitalisation.   The GSF Centre CIC care is a not-for-profit  Social Enterprise Community Interest Company.
Based on the CKS topic; Heart failure - chronic (May 2015), 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.
Presenter notes
This information is based on guidance from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [GMC, 2010]; guidance on the Mental Capacity Act from government departments and the British Medical Association [Office of the Public Guardian, 2005; BMA, 2007; Department for Constitutional Affairs, 2007; BMA, 2008; BMA, 2009]; and a review article [Nicholson et al, 2008].
Based on the CKS topic; Heart failure - chronic (May 2015).

13. Advance decisions Advance decisions: 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 (e.g. artificial ventilation).
Cannot refuse basic care.
Presenter notes
This information is based on guidance from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [GMC, 2010]; guidance on the Mental Capacity Act from government departments and the British Medical Association [Office of the Public Guardian, 2005; BMA, 2007; Department for Constitutional Affairs, 2007; BMA, 2008; BMA, 2009]; and a review article [Nicholson et al, 2008].
Based on the CKS topic; Heart failure - chronic (May 2015).

14. When are advance decisions binding?
When the person:
Is at least 18 years of age.
Has the necessary mental capacity.
Specifies treatment to be refused, and the applicable circumstances.
The advance decision has not been withdrawn.
Presenter notes
This information is based on guidance from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [GMC, 2010]; guidance on the Mental Capacity Act from government departments and the British Medical Association [Office of the Public Guardian, 2005; BMA, 2007; Department for Constitutional Affairs, 2007; BMA, 2008; BMA, 2009]; and a review article [Nicholson et al, 2008].
Based on the CKS topic Heart failure - chronic (May 2015).

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.
Presenter notes
This information is based on guidance from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [GMC, 2010]; guidance on the Mental Capacity Act from government departments and the British Medical Association [Office of the Public Guardian, 2005; BMA, 2007; Department for Constitutional Affairs, 2007; BMA, 2008; BMA, 2009]; and a review article [Nicholson et al, 2008].
Based on the CKS topic Heart failure - chronic (May 2015).

16. Management of end stage HF
Optimise treatment
Seek specialist advice if all treatment options have been considered.
Co-ordinate care services
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
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004 (Improving supportive and palliative care for adults with cancer (NICE guideline).Guidance on Cancer Services.); National Clinical Guideline Centre for Acute and Chronic Conditions, 2010] (Chronic heart failure. National clinical guideline for diagnosis and management in primary and secondary care (full NICE guideline), and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
NICE found substantial evidence from observational studies that people with heart failure and their informal carers have considerable unmet needs, such as symptom control, psychological and social support, planning for the future, and end-of-life care [National Clinical Guideline Centre for Acute and Chronic Conditions, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

17. Managing symptoms Breathlessness Pain
Optimize treatment with diuretics.
Fluid restriction (between 1.5 L and 2 L daily).
Pain
Often caused by cardiac ischaemia.
Can be relieved with morphine and nitrates.
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.
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004 (Improving supportive and palliative care for adults with cancer (NICE guideline).Guidance on Cancer Services.); National Clinical Guideline Centre for Acute and Chronic Conditions, 2010] (Chronic heart failure. National clinical guideline for diagnosis and management in primary and secondary care (full NICE guideline), and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
NICE found substantial evidence from observational studies that people with heart failure and their informal carers have considerable unmet needs, such as symptom control, psychological and social support, planning for the future, and end-of-life care [National Clinical Guideline Centre for Acute and Chronic Conditions, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), and NICE guidance (2010); Management of chronic heart failure in adults in primary and secondary care.

18. Managing symptoms Urinary incontinence:
Often related to weakness and the use of diuretics.
Can be managed by:
Careful timing of diuretic doses.
Use of incontinence pads.
Insertion of a urethral catheter, or for men, a urisheath.
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, 2004 (Improving supportive and palliative care for adults with cancer (NICE guideline).Guidance on Cancer Services.); National Clinical Guideline Centre for Acute and Chronic Conditions, 2010] (Chronic heart failure. National clinical guideline for diagnosis and management in primary and secondary care (full NICE guideline), and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
NICE found substantial evidence from observational studies that people with heart failure and their informal carers have considerable unmet needs, such as symptom control, psychological and social support, planning for the future, and end-of-life care [National Clinical Guideline Centre for Acute and Chronic Conditions, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), 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.
Continue necessary drugs by an appropriate route.
Ensure that:
Physical and emotional symptoms are well controlled.
Religious and spiritual care is offered if wanted.
Environment and care setting are appropriate.
Presenter notes
These recommendations are in line with guidelines from the National Institute for Health and Care Excellence (NICE) [NICE, (Improving supportive and palliative care for adults with cancer (NICE guideline).Guidance on Cancer Services.); National Clinical Guideline Centre for Acute and Chronic Conditions, 2010] (Chronic heart failure. National clinical guideline for diagnosis and management in primary and secondary care (full NICE guideline), and policies published by the Department of Health [DH, 2008; End of Life Care Programme, 2008].
NICE found substantial evidence from observational studies that people with heart failure and their informal carers have considerable unmet needs, such as symptom control, psychological and social support, planning for the future, and end-of-life care [National Clinical Guideline Centre for Acute and Chronic Conditions, 2010].
Based on the CKS topic; Heart failure - chronic (May 2015), 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:
They 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:
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.
Co-ordinate care services
A 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.