Bethan Edwards outlines why equitable access to palliative and end of life care must be prioritised by the next Welsh Government.
Dying, death and bereavement are inevitabilities that every individual will have to face at some point in their life – if we wish to see both our loved ones and ourselves dying comfortably and in a place of our choosing, we need to make sure that improving end of life care and support is everyone’s business.
Coronavirus has brought death to the forefront of the nation’s attention under the most tragic circumstances. Issues surrounding how and where people die have become more familiar to us all.
However, thinking and talking about dying is still considered taboo. This sometimes inhibits important conversations that need to happen to ensure that everyone affected by dying, death and bereavement has the best possible experience.
Prioritising End of Life Care
Of the 34,000 people who die in Wales each year, at least 75% would benefit from some form of palliative or end of life care. But for many reasons, 25% of these people will not have access to the care and support that they need.
Today, we are launching our 2021 Welsh Parliamentary election campaign – ‘Dying well in Wales: Delivering the best end of life care for all’.
Our original manifesto was released in early 2020, but with the outbreak of coronavirus and a renewed focus on the importance of end of life and bereavement care, our calls for the next Welsh Government needed to be reconsidered and contextualised.
“Palliative care is a cross-cutting area across all condition-specific delivery plans, but this must not be used as substitution for a specialised strategy.”
We found that the issues highlighted in early 2020 are still a problem today and have since been exacerbated due to the challenges brought about by the pandemic.
Now more than ever, it is vital to have a well-resourced health and social care service, with a workforce that feels supported and equipped to deliver accessible and high-quality palliative and end of life care.
A rapidly growing and ageing population, combined with an increase in comorbidities, means that providing specialised care is becoming increasingly important; by 2040, the demand for palliative care in England and Wales is set to increase by 42%.
In our revised manifesto, we have identified three areas that need immediate attention and action over the next parliamentary term. These areas are:
- Ensuring equitable access to palliative care services
- Identifying and meeting expectations of everyone approaching end of life
- Implementing a person-centred and universal bereavement strategy in Wales
To support the progressive movement needed in each of these areas, our manifesto also outlines numerous recommended actions.
End of Life Care Delivery Plan
In its simplest form, ‘Dying well in Wales’ urges all political parties in Wales to commit to prioritising end of life care from 2021 and beyond. Similar to other organisations’ manifestos this year, this includes calling for renewed health and social care delivery plans.
In March 2020, some major conditions such as cancer, stroke and heart disease received confirmation of a successor approach to their plans. We have yet to receive the same confirmation for end of life care.
Without a strategic and accountable framework for improving palliative and end of life care in Wales, we are worried that the sector will be left behind.
It is true that palliative care is a cross-cutting area across all condition-specific delivery plans, but this must not be used as substitution for a specialised strategy for end of life care services.
A clear, resolute and fully resourced end of life care delivery plan is vital if we wish to see everyone in Wales being able to access the person-centred and value-based care and support that they deserve.
What Matters Most Conversations
The ‘What Matters Most Charter’ was developed by a UK-wide group of experts, in consultation with charities, health and social care bodies and patients. It aims to change end of life care planning to be more focused on what makes life good for the individual.
The charter enables professionals and patients to have conversations centred around their relationships and personal preferences as well as addressing their clinical needs.
‘Dying well in Wales’ asks for the next Welsh Government to endorse this charter. As a declared Compassionate Country, Wales should be leading the way in encouraging people to think about their needs and wishes to ensure that these can be recognised and met early enough.
An important part of this movement is encouraging open and honest conversations about death within society.
We are currently engaging with Members of the Senedd and our supporters, and asking them to talk openly about what matters most to them when they think about approaching the end of their life; whether this is to be surrounded by family, to have their favourite song playing, or even to have their pet nearby.
Using the hashtags #whatmattersmost or #bwysigimi (in Welsh), we want to open up the conversation about dying and death to enable more people to feel comfortable and confident in expressing their wishes.
There is only one chance to get it right and the consequences of not being able to meet yours or your loved one’s preferences can be devastating.
You can access the Marie Curie manifesto in English here and in Welsh here.
