Dying Matters Awareness Week

This year, 2nd-6th May marks Dying Matters Awareness Week. 

Spearheaded by Hospice UK, Dying Matters Awareness Week is an open invitation to individuals, families, and businesses across the UK to hold honest, transparent conversations about death and dying.

What does death mean to you and your loved ones, for instance? What plans and processes do you have in place for the end of your life – or that of a relative? 

Dying Matters Awareness Week aims to help people all over the country tackle these big questions. To overcome societal stigmas around death and dying by speaking frankly and forwardly about it: with our friends, our loved ones, and our colleagues.

So why is it so important for everyone – regardless of their age, level of health, or whether they’ve already been directly affected by death – to open up about dying?

There are a lot of good reasons, but they all boil down to one key word: dignity.

How do we ensure that everyone receives a dignified death? And, while most of us can conceptualise what dignity in death looks like in principle, how does it look in practice – in a palliative care setting, such as a hospice, or a hospital?

An article in the Ulster Medical Journal identifies dignity’s four defining qualities. With these elements in place, a dying individual can experience as close to a ‘good’ death as possible – one in which they pass away in the circumstances of their choosing.

To achieve a dignified death, respect, autonomy, empowerment, and communication must all be present. So, then – how can we ensure that all of us have access to these pillars of dignity at end-of-life, and that the right structures of care and support exist?

Firstly, we can talk about it – and that’s exactly what Dying Matters Awareness Week is trying to achieve.

But we also need to consider what the ingredients for a dignified death – respect, autonomy, empowerment, and communication – actually look like for patients at end-of-life.

To respect patients, we must value not only their privacy and space, but their wishes. We need to understand their unique cultural, spiritual, emotional, and psychological needs. Then, we need to make arrangements for these – ensuring that patient care takes a holistic, rather than a narrowly clinical, view.

To give patients autonomy, we must equip them with the tools to make their own choices around their care and future, with the support of family and healthcare professionals. And, in case deterioration of the patient’s condition makes lucid decisions impossible, we must empower them to plan effectively – ahead of time.

This, of course, requires communication. Facilitating a conversation with the patient and their loved ones to forge a path forward, together, and keep everyone on the same page.

Taking into account these considerations of what constitutes dignity at end of life, the new ReSPECT framework – currently being rolled out across the country – achieves all of the above.

ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a short plan, that – should a person require healthcare in an emergency – communicates that person’s choices. It’s a collaborative document made by patients and healthcare workers together, and is particularly important for those nearing the end of their life.

By communicating their wishes clearly, ReSPECT empowers patients to retain their autonomy. This helps ensure a dignified outcome for the patient – no matter what happens.

Dignity at end of life is a human right – something we’re all entitled to. And it’s not just the dying individual alone that benefits. Crucially, dignity in death is also a powerful force of good for the families. Knowing that their loved one has died in exactly the way they wanted to – the right place, the right people present, the right rituals, and the right treatment plan – is a vital source of closure and comfort during one of the most difficult times in their lives.

That’s why we need to be discussing those practicalities around end of life, and how dignity can be achieved – even if they don’t pertain to us (or our families) just yet. 

That’s why Dying Matters Awareness Week is so important. Because, without first having those tough conversations – building that psychological infrastructure by choice, now, rather than only when we’re forced to later – we won’t have the foundations to discuss death when it does personally affect us.

So please – this Dying Matters Awareness Week, join us in speaking up and out about death, and dignity. Let’s get the UK talking about – and planning for – end of life, and show our healthcare and political leaders what we need to make sure those support structures are in place. For dignity, at death. For everyone.