Heart failure Programme pioneers new care approach

Pioneering palliative care for people in Glasgow with advanced heart failure has been shown to improve patients’ understanding of their condition and planning of care, meaning improved quality of life in their final days.

The unique Caring Together partnership between the British Heart Foundation (BHF), Marie Curie and NHS Greater Glasgow and Clyde saw patients receive more integrated healthcare that put their wishes first.

People with advanced heart failure have similar palliative care needs to people with cancer. They have a significant symptom burden yet have poorer access to supportive and palliative care services.

In 2011 the BHF and Marie Curie funded the £1.3m Caring Together Programme to provide improved, specialist end of life care. It was estimated that one in 10 heart failure patients in the NHS Greater Glasgow and Clyde area had palliative care needs. The BHF also invested in Marie Curie’s hospice in Glasgow.

Caring Together Programme Manager Iain Armstrong explained:

Under Caring Together, the patient’s whole healthcare team, including the patient’s GP, cardiologist and heart failure nurse, are closely involved, critically, along with the patient and carer. Crucially, a medical anticipatory care plan is shared among all, which means that everyone is aware of the patient’s wishes and preferences.

In the past, if the patient had not expressed where they wanted to die, when they became really breathless they would be admitted to hospital for an average stay of 14 days. Under Caring Together the goal is to improve the patient’s experience, ensuring that they can receive their treatment at home where they want to be, rather than in hospital.

Professor Bill Noble, Medical Director from terminal illness charity Marie Curie, said:

Heart failure is a fluctuating terminal illness where progression is often unpredictable and people will have varying palliative care needs. This is why the multi-disciplinary approach of the Programme, where care is based on individual’s need rather than a specific diagnosis or prognosis, works particularly well.

Access to palliative care for people with advanced heart failure remains inadequate despite around 30-40 percent of people dying within a year of diagnosis.(1) It is vitally important that we ensure people living with heart failure are given equal access to care that will make a huge difference to their, and their family’s lives.

Heart failure is a frightening and debilitating condition whereby the heart can’t pump blood around the body as well as it needs to. In severe cases it leaves people disabled and breathless even when resting. The most common causes are heart attack leading to heart muscle damage, high blood pressure and heart muscle disease. Around 48,000 Scots have been diagnosed with heart failure and 11,300 in the NHS Greater Glasgow and Clyde area.

In an evaluation of the patient outcomes, 43 people were included in the Caring Together Programme and they were compared with 34 patients who received the usual care. All were on optimal cardiac treatment. Results of the evaluation show (2):

• Understanding of their condition was much better and planning for future care more likely to be documented with Caring Together participants
• The average cost to the NHS was £785 less for people in the Caring Together group as they had fewer nights in hospital, fewer nurse contacts and lower drug costs, even though they had more GP contact than those receiving the usual care.
• Carers reported less of a burden
• Caring Together participants commented favourably on continuity of care between hospital and community
• Management of symptoms and quality of life improved in both groups.

While the Caring Together Programme has now concluded, the service is being continued by NHS Greater Glasgow & Clyde.

Dr Karen Hogg, Caring Together Consultant Cardiologist, said:

Caring Together is designed to ensure patient-centred care, to maximise quality of life. In addition, it improves coordination of care by producing medically supported, tailored care plans encompassing the patient’s preferences and priorities of care.

This approach to care for patients with advanced heart failure is delivered by the patient’s core heart failure and primary care teams supported by specialist palliative care. 

At its centre are core components of care, which are fundamental to provide the care, but allow for flexibility for this approach to be applicable to people living with other types of cardiac disease and other chronic disease where symptoms and hospital admission remain despite treatment offered by their speciality.  The flexibility of this approach also affords transferability, not only to other disease processes, but the broader community across the UK. 

Going forward this approach to care, aligned to realistic medicine, will improve care for patients, their carers and the healthcare systems.

The Caring Together lead team is now sharing the programme’s findings in the UK and internationally, and educating clinicians in other parts of Scotland, through funding from BHF and the Scottish Government, where there is interest in adopting the programme.