I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).”
Everyone will die. It is one of the few things in life that is guaranteed. The challenge for services is to ensure that end of life care and support makes this time as good as possible. The quote above is from Every Moment Counts – Produced by National Voices and the National Council for Palliative Care, in partnership with NHS England in 2015. In the Foreword to the report, Dr Bee Wee, National Clinical Director for End of Life Care says “Everyone’s experience is unique: one size cannot fit all. This narrative reminds professionals and volunteers to stop, think and respond in a way that is, and feels, honest and personal to that person in front of them. It helps service providers and commissioners to look at the service they are entrusted to deliver through the eyes of the person who needs that care”.
The document goes on to highlight the importance of:
- having honest discussions;
- working towards goals that put the person and those around them at the centre;
- meeting physical emotional, spiritual and practical needs; and
- having responsive and timely support day or night.
In 2017 ABMU (now Swansea Bay) Health Board in South Wales commissioned an independent review of their specialist palliative care service. This was completed in 2018 and included a review of good practice across the UK, but particularly in England. The examples were wide ranging but below is a summary of a couple that particularly resonate, given the powerful statements from Every Moment Counts.
The Gold Line service provided by the Airdale NHS Foundation Trust is often given as an example of good practice in relation to providing responsive and timely support day or night. It provides a dedicated 24/7 telephone service for people who may be in their last year of life and their families across Airedale, Wharfedale, Craven and Bradford. Nurses operate the helpline and the service has resulted in a significantly higher proportion of people being able to die in the place of their choosing (usually at home) than the national average.
This initiative is similar to others across the UK, however, what sets it apart from many includes the 24/7 access and the qualifications and experience of the staff operating the phone lines. The service also provides support to around 600 care homes, both within the Trust’s boundaries and across other areas of the UK. The impact of the service includes a significant reduction in hospital admissions over and above the levels of reassurance and support given to individuals and their families.
At the centre of the messages from Every Moment Counts is the need to work towards goals that put the person and those around them at the centre. Within Social Care this is a familiar concept that has its roots in Learning Disability services and Person-Centred Planning (PCP). The ABMU review found little evidence of PCP principles and approaches being used broadly within Palliative Care, however, the McMillan website provided a link to ‘Living Well: thinking and planning about the end of your life’. This is produced by Helen Sanderson who will be well known to those who use PCP approaches in their work. One of the challenges of all services is ensuring there is a coordinated approach from different agencies when supporting individuals. This needs to centre on everyone knowing what is important to that individual (and family) in order that there is a coordinated and efficient approach to support. Very often services rely on MIS systems to record this information (when it is recorded). However, in most cases different services (including Health, Social Services, Ambulance, Third Sector) use different MIS systems that results in a fragmentation of information and support.
Findings from the Review, and messages from the wider sector, also identified the critical importance of having honest discussions. Whilst levels of awareness and skills within Specialist Palliative Care staff are usually high in this area, this is often not the case for others who may have contact with individuals in their last 12 months of life. This includes staff within the wider NHS, social workers, social care staff within care homes, domiciliary care, GPs and others. The result of this is that families in particular can go through unnecessary distress, particularly after the death of their loved one. Most areas of the UK will probably have training for some of these wider groups of staff, but it is an ongoing challenge to ensure that levels of awareness and skills are developed. Not everyone might be able to have the skills to have these very difficult conversations, but at least they need the awareness to signpost the person to somebody who does.
In summary, the UK is seen as one of the leaders in the world in relation to Palliative Care. This is mostly due to the work of Dame Cicely Saunders, the founder of the modern hospice movement. We should be proud of the knowledge and expertise we have developed, but never be complacent about the need to do more. The messages are simple in concept but often difficult to put into practice across all our services, in summary these include:
- Have honest conversations with individuals and their families – it’s not easy, but it really makes a difference;
- Know what is important to individuals and their families. Use the learning from PCP to contribute to this and consider that a person-centred plan on paper and held by the individual might be more useful than information in a computer system;
- Respond to this in a coordinated way across services, minimising stress for all concerned;
- Look at ways in which support can be provided 24/7 via telephone and tele-conferencing. This can enhance the quality of life of individuals and their families and reduce the stress on primary and secondary services.
You matter because you are you, and you matter to the end of your life.” Dame Cicely Saunders
By Roger Rowett