End of Life, Death and Grief: A Provocation

Author: Karen Parry

In seeking to create an international Community of Interest looking at what equitable, citizenship-based end of life, death and grief care looks like, I wanted to start with a provocation. Two questions for reflection to invite us to pause for a while and acknowledge that our lives are finite. And then to consider how citizenship at the end of our life might be enacted.

What does ‘dying well’ mean to me?

How much of my concept of dying well would rely on good neighbourhood community support?

In the UK, research shows that 56% of people would like to die at home. This might be higher if it wasn’t for people’s fear that community-based palliative care would be inadequate to manage their symptoms well. But only 29% of people do die at home with 43% dying in hospital. It is also less common for learning disabled people to die at ‘home’ (their normal place of residence) than non-disabled people, with 59% dying in hospital.

Before the NHS was established in the UK, it would have been unusual for someone not to die at home. Death was all around, and we had the knowledge, skills, customs and rituals to help us tend it within our communities, passed down through the generations. But as healthcare improved and life expectancy increased, death was gradually taken out of our homes and located in hospitals, while talk of it grew increasingly taboo. Our wisdom of how to tend to the dying that used to be passed from one generation to the next began to decline. At the same time our grief and mourning rituals became more private, another taboo subject to be avoided for risk of causing upset, offence or embarrassment. We are now a largely death-denying and grief-phobic society, de-skilled in so many ways. And this is now reflected in how and where we die.

I am interested in other global Citizen Network members’ experiences.

• Where is the expertise for the end of life and dying located in your culture? Is it largely hospital based? Hospice? Community/neighbourhood? Or is there another model entirely?
• Does this meet the needs and wishes of people?
• Are learning disabled people’s experiences of end of life care the same as those of the rest of the population?
• To what extent are open, honest conversations about the end of life, death and grief a part of your culture?

As an End of Life Doula, I offer support to people approaching the end of their life and those around them, to support them to die well on their own terms. This is not about assisted dying (for which a Bill is currently having its second reading in the House of Lords), but about developing our right to active citizenship in death as a universal human experience, instead of it being an event which we have become largely disconnected from and disempowered within. For me, good end of life care includes time and support for

• planning and preparation – to explore our wishes and values and to put in place advance decisions to make sure these are honoured
• accessing good quality information to help us in making choices about the end of our life
• advocacy to ensure our wishes are respected
• thinking about our legacy – what we want to leave behind and the story that was our life
• opportunity to explore the big questions of life, death and our place in the universe, using ritual to make meaning
• holding space for challenging feelings and conversations
• ensuring nobody dies alone
• acknowledging grief and actively tending to it

The Compassionate Communities model of end of life care pioneered by Allan Kellehear is highly aligned to Citizen Network values and mission. As only 5% of time spent living with a serious illness, dying and grieving is spent with healthcare professionals, the compassionate communities model focuses on the remaining 95% of the time. The time we spend with neighbours, colleagues, family and friends. A neighbourhood citizenship approach.

An End of Life Doula fully embodies this approach. As a skilled companion we work alongside the dying person and those around them to cultivate an environment where they feel safe, supported and empowered. We complement the work of medical professionals by addressing non-medical needs and providing holistic, person-centred care. Sadly, in the UK this is not a role that is widely known about or understood. When it is accessed, it is mostly privately funded by individuals with the financial means to do this, alongside some charitable funding to support people facing financial hardship and some commissioned trails within the NHS starting to happen.

Of course, affordability isn’t the only barrier. Cultural competency, diversity in the workforce, additional skills to meet the needs of particular communities, geographical access and other factors will all play a role.

We know that in death, as much as in life, learning disabled people will experience inequality and disadvantage. So, as a global network can we explore what citizenship-led, community-based, person-centred, rights and choice-based end of life care would look like, and how we can ensure this offer is inclusive of learning disabled people?

If this line of enquiry aligns with your areas of interest, I would love to hear from you to start the conversation.

Get in touch with Karen by clicking the links on her profile below, and by visiting her website at: https://tending3magpies.co.uk/

The publisher is Citizen Network. End of Life, Death and Grief: A Provocation © Karen Parry 2025.