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National Collaborating Centre for Chronic Conditions (UK). Chronic Heart Failure: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care. London: Royal College of Physicians (UK); 2003. (NICE Clinical Guidelines, No. 5.)

  • This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

Cover of Chronic Heart Failure

Chronic Heart Failure: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care.

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12End of life

The aim of palliative care is to improve the quality of life for patients with incurable disease. It also aims to improve the quality of dying and to ameliorate the potentially devastating effects of dying on the family and carers. There is substantial evidence for considerable unmet palliative needs of patients and informal carers in heart failure.244,252–254 The main areas of need include symptom control, psychological and social support, planning for the future and end of life care.244,245,252–258

General palliative care is delivered by the usual professional carers of the patient and family where the palliative need is of low to moderate complexity. Specialist palliative care services are provided for patients and their families with palliative need of moderate to high complexity. There is only anecdotal evidence that general or specialist palliative care improves the care of patients with heart failure specifically. There is some evidence that specialist palliative care in cancer improves symptom control, reduces time spent in hospital, improves patient and carer choice and satisfaction and reduces overall cost.259,260 (IV)

It is not known when, how and by whom supportive and palliative care is best provided during the patient’s journey from diagnosis of heart failure to death. The provision of this type of care is complex because it must respond to a broad range of needs and is likely to be provided in a variety of different settings. There is no good evidence on the effects of palliative care on quality of life of patients with heart failure.

Owing to the significant risk of sudden death at all stages of the disease, there may be a role for ‘prospective’ management of uncertainty in all patients. This might include planning for the future and discussion of resuscitation preferences.

NICE has commissioned supportive and palliative care guidance to be published 2003/4. While it will focus on commissioning services for patients with cancer and their carers, it is anticipated that the guidance may inform the development of effective service models for other groups of patients with similar needs. This guidance will focus on service configuration and not clinical care; no similar guidance has been commissioned for other diseases.

Health economic evidence: Little is known about the health economics of palliative care but it is important to bear in mind that a significant proportion of the cost burden of this care will fall on the patient and their carers.

Further research in this area is recommended by the guideline development group.

RECOMMENDATIONS

R90.

Issues of sudden death and living with uncertainty are pertinent to all patients with heart failure. The opportunity to discuss these issues should be available at all stages of care. [GPP]

R91.

The palliative needs of patients and carers should be identified, assessed and managed at the earliest opportunity. [GPP]

R92.

Patients with heart failure and their carers should have access to professionals with palliative care skills within the heart failure team. [GPP]

Copyright © 2003, Royal College of Physicians of London.
Bookshelf ID: NBK65608

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