We must not ignore people's wishes as they approach death

We must not ignore people's wishes as they approach death An end-of-life self assessment tool can be used to ensure care is tailored to patients' needs.

At Sue Ryder, we remain concerned that too many people approaching the end of life are still not having their voices heard. After our Ways and means report, we commissioned the thinktank Demos to undertake focus groups with hospice users and found that an overwhelming majority of people said they had only ever discussed their wishes and preferences with family and friends and not health professionals. The majority of hospice users were therefore unsure whether their wishes and preferences were recorded and understood by health professionals delivering their care.

The report findings are consistent with existing research by end-of-life-care coalition, Dying Matters, which revealed that 35% of GPs reported never having initiated an end-of-life-care conversation with any of their patients.

This comes despite the launch of the Preferred Priorities for Care form back in 2010. The form was designed to be obtained from a GP, district or specialist nurse or social carer and used to record a patient statement about preferences. The form should act as a guide in delivering care that best suits individual patients but it seems that it is not widely used.

The vital need for health and social care professionals to deliver person-centred care for patients approaching the end of life is becoming more evident in light of Britain's rapidly ageing population and increases in the number of people with multiple long-term conditions. By 2030, the number of deaths each year will outnumber the number of births, rising by 17% to 590,000. NHS spending on end-of-life care is also expected to increase by £5bn to £25bn by 2030.

In July this year, the independent Neuberger review recommended that the use of the Liverpool Care Pathway should be phased out. 

A month after the Neuberger review recommendations, NHS England announced the new Leadership Alliance for the Care of Dying People, to which several organisations, including Sue Ryder, the General Medical Council and Health Education England, are members.

The alliance, which is led by Dr Bee Wee, national clinical director for end-of-life-care at NHS England, is responsible for taking forward learning from the Neuberger Liverpool review and for issuing a "strategic and system-wide level" response to the recommendations, including personalised end-of-life-care plans for individual patients.

What next for improving end-of-life-care?
In response to the challenges about end-of-life-care, Sue Ryder – in partnership with Helen Sanderson Associates, Hull city council and St Ann's Hospice – has developed an end-of-life-care self assessment tool. The tool shows what good end-of-life care should look like through a series of comprehensive and evidence-based prompts and suggestions.

Health and social care professionals can use the tool to check that the care they are providing is tailored to their dying patient's individual needs and wishes in their anticipated last year of life, as well as use to see how they can develop, improve and measure their current provision.

The tool is designed with the patient's needs at the forefront ensuring a "person-centred" approach, as opposed to focusing on a general end-of-life-care method or pathway.

Improved practitioner–patient communication, consistency in staff support and care co-ordination are all key tools, but there also needs to be a cultural shift towards a more empowering and risk-managed approach. This will need root and branch training and awareness raising for healthcare professionals.

Our Ways and means report revealed that many felt there is an increasing need for dying individuals to be recognised as the decision maker. The current system was seen as being too paternalistic and risk averse, particularly with regard to transitions from hospital to home and avoiding hospital admissions from home. Too many people do not have the opportunity to exercise choice and control.

Therefore, a greater focus on patient wishes and needs is an obvious way of improving people's overall experiences and ensuring they receive more seamless support.

Everyone's journey will be different. Health professionals should be flexible according not only to patient disease or stage of illness, but their personal preferences and wishes.

We must be able to support people in a more flexible way – this will be critical if our end-of-life-care provision is to be fit for purpose in the future.

The self assessment tool, 'Progress for Providers – end of life care' is available for free download

Phillip Ball is palliative care services manager at Sue Ryder Guardian Professional.