A high proportion of patients with confirmed heart failure, up to 40-50% in some studies, will experience sudden cardiac death. Others will deteriorate more slowly.
End of life care is care that helps all those with advanced, progressive and incurable conditions to live as well as possible until they die.
It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes physical care, management of pain and other symptoms and provision of psychological, social, spiritual and practical support.
There is a clear role for specialist palliative care in the terminal phase of heart failure and this may be provided in hospices or hospital based departments or on a consultancy basis in the community.
End of life care should be available in all places of care be it the patient's home, a care home, hospice or hospital, including coronary care units where many heart failure patients are admitted.
Step 1: Discussions as the end of life approaches.
Prognostic tools (‘trigger tools’) can help to identify patients who are entering the end of life phase of their illness. Once this point is reached, the patient should be part of a discussion within the multidisciplinary team (MDT) to confirm that treatment has been optimised, to reassess goals of care and to ensure that information relating to a change of emphasis to symptomatic care is appropriate and disseminated to all those involved with the patient.
Generic community based palliative care should be enabled and specialist palliative care involvement may be helpful. The patient and family should also be informed of the results of such deliberation and if possible contribute to this process with recording of their needs and preferences.
Step 2: Assessment, care planning and review. Agreed care plan and regular review of needs and preferences. Assessing needs of carers.
People with many symptoms often benefit from a full re-assessment from the palliative group (GP) and district nurse services. Financial and social (practical) helping services, emotional support services may become important at this point.
Step 3: Coordination of care.
Specialist heart failure nurses are in an ideal position to act as care coordinators. The use of these nurses has already been shown to improve care cohesion, engender better clinical outcomes.
Step 4: Delivery of high quality services in different settings.
As the illness progresses specialist heart failure care will need to be complemented by a range of other services.
Symptom management in advanced heart failure is complicated by both cardiac and renal factors. Multi-specialist input may be beneficial.
Step 5: Care in the last days of life.
The unpredictability of the course of the terminal phase may restrict choice of where patients are cared for and die. A multidisciplinary approach to care in the terminal phase with specialist palliative care involvement may improve care of the dying heart failure patient.
Step 6: Care after death.
Death may occur at a time of crisis, even when being transported to hospital. Sudden death in heart failure may complicate death certification or require the involvement. The relatives of those who die suddenly are at a higher risk of complicated bereavement. Bereavement support should be integral to heart failure management. Provision and prompt access to chaplaincy services may be important for some families.
Adapted from Connolly M., Beattie J., Walker D. End of life care in heart failure: A framework for implementation .National End of Life Care Programme Improving end of life care. NHS. National Health Service. Internet. July 2010. Accessed on December 22, 2010.