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Social Care Leaders: Playing a key role in end-of-life care

Debbie Sorkin National Director of Systems Leadership

Debbie Sorkin shows how good leadership in social care is at the heart of good end-of-life care  

This month’s issue of Care Talk focuses on end-of-life care. Of all issues in social care, this is one where good leadership matters most.   In the words of David Behan, Chief Executive of CQC:  “Dying is a universal part of life’s journey, and every individual will experience it in a different way. The importance of good care in the last years, months, days and hours of life cannot be overestimated – both for the person who is dying and for those who are important to them.” In their 2016 report, A Different Ending[1], CQC were clear that everyone, regardless of their background or circumstances, should have the same access to high quality, personalised care at the end of their lives.

So good, personalised end-of-life care that reflects the wishes and choices of the individual is fundamental to social care.  This is what we should all be able to expect:

“It was one of the most wonderful experiences of my life, because my dad died in his own bed, in his own home, with people he loved and who loved him around him. He died with a smile on his face.”

It follows that this is where your leadership skills and qualities, and those of your team, come to the fore.

These qualities are grounded in your values, as recognised in the very first chapter of the Social Care Manager’s Handbook, which talks about social care values.  These values recognise that the very best leadership practice is grounded in high standards of personal and professional integrity, and the commitment to delivery services that centre on, and respond to, the people who use them.

Compassion is a fundamental part of this.  In the words of the Handbook, this means “sympathy, empathy and caring rolled up into a genuine, purposeful and kind response that takes practical action to relieve someone’s distress or discomfort.”  In addition, “treating people with dignity and respect will run through your service like a golden thread.” 

So if leadership is based in values, then working with people at the end of their lives, and their families, with compassion and in a way that maintains and enhances dignity, is intrinsic to good social care leadership.

At the same time, it isn’t easy.  Aside from anything else, identifying an end-of-life phase can be difficult, particularly for people who have frailty or dementia.  Talking about end-of-life care can be difficult for everyone involved, especially family members and other loved ones.  Some people aren’t identified early enough, whilst poor communication prevents others – people who ‘don’t want to argue or make a fuss’ – from receiving good care and people who are vulnerable may not have their circumstances fully considered.  CQC, Age UK and the Alzheimer’s Society have plentiful examples of people not receiving end-of-life care that responds to their needs and preferences.

So how can you make this happen in practice?

Two ways suggest themselves.  Firstly, you can practise good social care leadership, as set out in in plain English in The Leadership Qualities Framework for Adult Social Care[2], which sets out what good leadership looks like at all levels of a team or an organisation.

It grounds leadership in behaviours, and how you act in everyday situations.  Two things follow from this: 1) leadership is for everyone, no matter what their job title is or what they do; and 2) everyone needs to take responsibility for what they do and address poor practice wherever they see it.

For end-of-life care, this means you can be a good leader whatever your role.  So if you’re an apprentice, or you’ve just started in your first care role, you can still act to ensure that people have access to high quality, personalised care at the end of their lives, and that their loved ones feel supported, listened to and involved.  In fact, end-of-life care is especially important at front-line level, as this is where issues are likely to come to light.

So it includes building and maintaining relationships; communicating in an open, accurate and straightforward way; having good collaborative networks; and encouraging contribution.    Good leaders, at all levels, build and maintain successful relationships, through being willing to listen, supporting others, gaining trust and showing understanding. This means recognising different perspectives and being able to empathise, taking others’ needs and feelings into account.  Good leaders also communicate effectively with individuals, appreciating their social, cultural, religious and ethnic backgrounds and their age, gender and abilities.  And this isn’t a one-way process: it involves encouraging contribution so that people feel they have the opportunity to engage in decision-making at an early stage. Even if you’re a front-line worker, the Framework makes clear that it’s part of your leadership role to support people who use services, and their loved ones, to express their views and needs, enabling them to participate in joint decision-making around end-of-life care.

Secondly, you can learn from what other organisations are doing around the country.  The Enhanced Health in Care Home Vanguards have published guidance on how to achieve better care for older people in residential care, including for end-of-life care.  In their Framework[3] they illustrate what this means in practice. There are core principles. Palliative and end-of-life care are priorities for any Enhanced Care Home, and the place has to ensure that it is addressing the needs not only of the individuals themselves but also of their family, carers and community.  They take a proactive approach, with advance planning so that people can be supported to die in their place of choice, and work closely with local health partners.  Care home staff are also supported with education and training.

So for example, Airedale and Partners’ Goldline provides a single point of contact for residents and their carers for help and advice, on a 24/7 basis, to support them whether in care homes or in the community.  Nottingham has a dedicated dementia outreach team in place, which includes specialists in end-of-life care.  And Sutton Homes of Care have a rolling training programme for end-of-life care.  It’s worth contacting these places: they have dissemination of good practice as one of their priorities.

So it’s worth seeing end-of-life care as an aspect of good social care leadership.  I saw it myself recently; a recent nominee for a regional care award provided truly exceptional end-of-life care, ensuring that individuals and their families were given dignity and respect – and therefore reassurance and support – throughout.  It made an enormous difference to the experience of all concerned.  In the words of Dame Denise Platt: ‘social care has the power to transform people’s lives’[4], and we have the privilege of being able to do this even at the end of those lives.  Your leadership can have a huge impact.  And it’s your leadership that makes the difference.

If you have examples of good leadership and systems leadership in action, please let us know at Care Talk: editorial@caretalk.co.uk.

Debbie Sorkin is National Director of Systems Leadership at the Leadership Centre Debbie.sorkin@localleadership.gov.uk

Twitter: @DebbieSorkin2

[1] http://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_FINAL_3.pdf

[2] See https://www.nsasocialcare.co.uk/about-us/leadership-qualities-framework

[3] https://www.england.nhs.uk/wp-content/uploads/2016/09/ehch-framework-v2.pdf

[4] The Status of Adult Social Care: Dame Denise Platt, 2007: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_074218.pdf

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