Barbara Monroe: I wish I had known …

Reflections from supporting 25,000 people plan for the end of life

At Compassion in Dying we recognise the need for a large-scale culture change around death and dying.

We’re working towards end of life care being truly person centred — not just measured by proxies such as place of death — but focused on understanding each person as an individual and delivering treatment and care which is based in their values and priorities.

Moving towards person led decision making (and the power shift that comes with that) is an essential part of enabling people to have the best end of life experience possible.

We want people to be able to:

• Talk openly about their wishes for the end of life
• Make informed choices, have the opportunity to discuss those choices with healthcare professionals and understand the likely outcomes of decisions about treatment
• Plan their care and record their choices

Putting the voice and experience of dying people at the centre

Through our information and outreach services we have supported over 25,000 people to make decisions about their treatment and plan their care.

We want to share this experience with the sector.

Recognise the value of information and honest conversations

We hear from the people we support that empowering people by giving them the information they need to make decisions is a potent way of changing the culture of death and dying and reducing misconceptions and fear.

One of the people featured in our report said:

“I wasn’t prepared for how quickly my husband went downhill and I think if someone had told him earlier about what may happen we might have been more prepared to ask about what choices he had for his care.”

Avoid the temptation of easy fixes

With the development of person centred care, place of death quickly became accepted as an indicator of how end of life care was meeting, or failing to meet, the wishes of dying people.

Common understanding developed that shifting hospital deaths to home would be a marker of success.

Yet, the data on where people want to die is in need of greater scrutiny. A home death is not necessarily a good death, which is often dependent on the extent and quality of support available.

If people understood the practical consequences of a home death would some of them change their minds?

What’s more, we know that place of death is a relatively low priority for people — who more often prioritise pain relief and retaining dignity.

To create a culture of dying that values the unique wishes of every individual we have to look beyond these kinds of proxy measurements, and enable people to make their own decisions about the end of life experience that is right for them.

Challenge the idea that death is a taboo

“We don’t like to talk about death” is a common theme for events and articles, reflecting the pervasive idea that death is seen as a taboo.

While it’s true these can be difficult conversations, labelling them as a taboo seems counterproductive.

YouGov polling we commissioned earlier this year found that only 14% of people would feel uncomfortable having a conversation about their end of life wishes with a healthcare professional — yet only 52% would instigate the conversation themselves.

It’s therefore important for us to shift the common belief that people don’t want to talk about death and dying. Healthcare professionals and people working in charities need to be aware that many people do in fact want to talk about death and dying. It’s often just that they don’t know where to start.

View the full report on the Compassion in Dying website. Talk to us on 0800 999 2434 or email.