How to deliver high quality end of life care

There is logic to the way in which the health service in Wales is being run. It started with some bold and broad statements in the Welsh Assembly’s programme, which were expanded by the then health minister in the high level vision statement Together for Health. This, in turn, has been underpinned by a series of delivery plans. 

The latest plan, Together for Health − Delivering End of Life Care, was launched in April by the new health minister, Mark Drakeford. It follows similar plans addressing cancer and stroke services and will be followed by programmes for heart disease and diabetes.

The approach to managing and delivering healthcare in Wales is underpinned by three principles:

• the NHS should remain a wholly public sector service, supported, where appropriate, by not for profit providers;
• its direction of travel should be determined by a strong central steer; and it
• it is best organised in large fully integrated units that are charged with the responsibility of taking the central steer and applying it in the context of local circumstances and need.

It is an approach that − one assumes deliberately − is informed by what characterises small country governance: short lines of communication, the closeness of the people to their elected representatives and “doing” governments.

Setting the bar

The end of life delivery plan is as good an example as you could find of the logic behind the NHS in Wales. It clearly identifies end of life care as a government priority. Mr Drakeford, in the first sentence of his forward, goes as far as to say: “How well we care for people who are dying reflects on how we care as a society.” 

The plan then goes on to set out some key indicators to measure success:

• the percentage of people dying in their place of preference;
• the percentage of people with palliative needs on a primary care practice palliative care register six months prior to death; and
• the percentage of people who die in their usual place of care and the percentage of those who die intestate.

The plan addresses a series of themes such as:

• supporting living and dying well;
• detecting and identifying patients early;
• delivering fast effective care;
• reducing the distress of terminal illness for patients and their families; and
• improving information and targeting research. 

It sets delivery aspirations for health boards and specific priorities that they are expected to address and report on openly every year.

Strength through integration

Throughout the plan there is a common theme that high quality effective and efficient services will only be achieved through integration − between the different parts of the NHS, integration with local government services and an integrated approach to the delivery of services by third sector organisations.

‘The service focuses care on the actual needs of the patient rather than delivering the same care for all patients’

The Maric Curie Cancer Care rapid response service in North Wales − currently running in four of the six local authorities in the Betsi Cadwaladr University Health Board area − is embedded in the board’s out of hours service. Calls into the service are assessed and if they feel the issue is one linked to end of life care then it is forwarded to the rapid response team.

This way of working within an existing NHS Wales service ensures specialised care and support is easily accessed, involves the minimum of transactional costs and can be delivered at the right time in the right place. The benefits are clear − patients get the care and support they need, when and where they need it, while pressure on the healthcare system is reduced as emergency admissions or GP attendances decrease.

Another example of the critical importance of integrated working is one we are actively seeking to roll out across Wales and about which we are currently in discussion with three health boards.

This service runs in the Neath Port Talbot area and is supported by Abertawe Bro Morgannwg University Health Board, which covers the area from Bridgend in the east to Swansea in the west. It focuses care on the actual needs of the patient rather than delivering the same care for all patients. For example, instead of providing a universal overnight support service to patients, we work closely with the district nurses, patient and family to establish what sort of care is needed and when.

‘Caring well for people who are dying reflects a caring society’

We employ a senior nurse who works in partnership with NHS colleagues to coordinate the support of Marie Curie nurses and meet the needs of patients and families. This nurse has an overview of all patients in the area with end of life care needs. Having this knowledge makes prioritisation and managing resources to meet changing demand much easier, thereby enabling a much more effective use of resources. The co-location of NHS staff and Marie Curie staff is central to making this integrated model of care work.

We are convinced the integrated approach to providing care at the end of life is the only way in which two, often perceived as conflicting, demands can be met − the wishes and needs of the patient and the ability to meet them within the resources available.

Integrating services in a way that focuses hard on patient need and preferences is not easy. It brings with it the imperative of a willingness to give up some control and take on new ways of working.

However, the principles described above, the organisational structure of the NHS in Wales and the characteristics of small country governance could together produce real the benefits to patient care of integrated working.

To reiterate what the health minister said: caring well for people who are dying reflects a caring society.

Simon Jones is head of policy and public affairs, Wales, at Marie Curie Cancer Care