Dying Matters, so let’s be ready

To mark the start of Dying Matters Week, NHS England and Improvement’s National Clinical Director for End of Life Care considers the theme of the week – ‘Are We Ready?’ – and how open communication with patients approaching death can enable better, more personalised care focussing on what matters to them:

Why is Dying Matters Week so significant? After all it is only one week in the year.

But this one week provides us with a focus for thinking deeply about death and dying. It encourages us to pause and work together to reach out to everybody across society, to spend time on a collective conversation on this subject which affects us all, and those we love – if not already, certainly at some future point in our lives. Nobody is immune. Death is inevitable, whether we acknowledge this reality or not.

This year’s Dying Matters Week carries the theme ‘Are We Ready? ’

For some, the diagnosis of a life limiting illness or the progression of frailty provides opportunity for getting ready for the very last stage of their lives. For others, death comes swiftly and unexpectedly, and they are deprived of time and opportunity to prepare themselves, to talk and to spend quality time with those important to them. Because we don’t know what lies ahead of us, it’s good to ask ourselves the question ‘are we ready?’ Can our family, friends and people close to us have the comfort of knowing that they can be confident about what’s important to us if we cannot say so at the time? In the same way that we accept that making wills is a responsible and loving action for the sake of those we leave behind, similarly, making clear our preferences and priorities ahead of time can be part of that loving act.

This week, we plan to focus each day on one of the six ambitions in the Ambitions for Palliative and End of Life Care Framework in turn.

Today we start with the first ambition – ‘each person is seen as an individual’. This lies at the heart of what personalised care aims to achieve, where we maintain a relentless focus on the person’s needs and what matters most to them.

The question ‘what matters to you’ is as pertinent to those who care for the person – whether family or friends, or paid staff – as it is for the person facing a progressive life limiting condition. We need to be prepared to ask this powerful question and to listen to the response carefully.

This is a good way to avoid making assumptions about what’s important to the other person. For example, there is a widely held assumption that most people want to die at home. But if you ask the question ‘what matters to you’, you may be surprised by the range of responses you get, many of which will have nothing to do with preferred location of death. Where, and how, people live before they die is often much more important.

The commitment the government made in their six-point response to the review of choice in end of life care expands on this first ambition. It moves us from the commitment to initiate and have honest conversations with people so they can make informed decisions about their own care and support, to developing personalised care and support plans which are shared with others involved in their care, including those important to them to the extent that the person wishes.

Over ten years ago, The King’s Fund published a review paper by The Point of Care Programme called ‘Seeing the Person in the Patient’.  The NHS Long Term Plan emphasises personalised care as a fundamental component of health care.

The focus on the person being seen and regarded as a unique individual must not waver. Each of us has a responsibility to promote and support that – whether as commissioner, manager, practitioner, volunteer or member of this society of ours.

For more information, please see:

Professor Bee Wee

Professor Bee Wee CBE, National Clinical Director for End of Life Care, NHS England and NHS Improvement.

Bee is a Consultant in Palliative Medicine at Sobell House and Katharine House Hospice, Oxford University Hospitals NHS Foundation Trust and Associate Professor at University of Oxford, where she is also a Fellow of Harris Manchester College.

Originally from Malaysia, Bee qualified from Trinity College Dublin in 1988, trained in general practice in Dublin, then moved into palliative medicine in Ireland, Hong Kong and the UK. She was Consultant/Senior Lecturer at Countess Mountbatten House, Southampton (1995-2003), where she became Deputy Director of Education, School of Medicine at the University. She was President of the Association for Palliative Medicine of Great Britain and Ireland (2010-13), National Clinical Lead for e-ELCA, a DH-commissioned e-learning programme for end of life care, now hosted by Health Education England, and Chair of the Topic Expert Group for the NICE Quality Standard for End of Life Care (2011). She enjoys cooking and allotment gardening for relaxation.

Bee is Honorary Professor at Sichuan University, China, and holds an Honorary Doctorate of Science at Oxford Brookes University. As NCD, she led the Leadership Alliance for the Care of Dying People and is co-chair of the National Partnership for Palliative and End of Life Care which was responsible for publishing the ‘Ambitions for Palliative and End of Life Care: a national framework for local action’ in 2015. She was awarded a CBE in the Queen’s New Year’s Honours list in 2020 for services to palliative and end of life care.

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