Divisive or decisive - approaching end of life care for people with dementia

Not everyone realises that dementia is a terminal illness. A diagnosis can be confronting enough, tipping lives upside down and radically altering expectations of the future; thinking about dying can sometimes be pushed to the side.

This can leave their families and carers in a difficult situation down the track and throw healthcare workers into confusion about making clinical calls.

Dr Nathan Davies, Professor of Ageing, Applied Health and Care Research and Co-Lead of the Centre for Psychiatry and Mental Health at the at the Queen Mary University of London, spoke at our recent International Dementia Conference in Sydney about palliative dementia care.

He's been part of a team developing clinical rules of thumb and decision-making tools (still under development) to guide medical teams, families and carers towards clarity in what can be an incredibly stressful and emotional time.

Nathan pointed out that decision-making issues often stem from the overlapping areas of uncertainty for the person concerned. 

Using a model developed by Dr Simon Etkind, he detailed five aspects that muddy the water.

Uncertainty in palliative dementia care decision-making

1. “Physical uncertainty - people with dementia, in the later stages especially, often have lots of different conditions. They're living with frailty. They're living with dementia. They're living with diabetes and hypertension. And that causes a lot of complexity - how do you manage all these interacting conditions?”
2. “Practical uncertainty - our systems and our services are not perfect. Healthcare systems don't talk with each other, but our health and social care systems certainly don't talk with one another at all, either. And so this can lead to a fragmented care system: so what happens when someone with dementia is admitted to the acute ward and they discharge back into the community? How do we ensure that that is a smooth process, and the person, as well as the families that are supporting them at home, get the care and support that they need?”
3. “Social uncertainty: people with dementia are very aware that their families are uncertain about what the best thing to do is to support them. Professionals are uncertain and that collective uncertainty creates more uncertainty across the board.”
4. “Psychological and existential uncertainty: this comes right from diagnosis, when you feel completely overwhelmed with the diagnosis that you've just been given and all the information you hopefully would have got. But not everyone does get all the information they need, but this goes right through to end of life and advanced stages of dementia as well. So you feel completely overwhelmed by the complexity of different symptoms, interactions and the uncertainty around prognosis.”
5. “Total uncertainty: all this is surrounded by constant change. It might be our health and social care systems completely changing. It might be our feelings changing, or our physical symptoms, changing. So, all of this is in a continuous flux.”

No silver bullets

While advanced care planning is often touted as the solution to some of this uncertainty, Nathan disagreed.

“We hear time and time again - advanced care planning is the solution,” he said.

“Advanced care planning is the silver bullet in in dementia care and end-of-life care for people with dementia. I really don't think it is. It's part of the solution, but it's not the silver bullet.

“It's quite often been seen as a tick-a-box: Yes, we've had a conversation. Yes, they don't want to have a DNR (Do Not Resuscitate). We've done all the conversations about end-of-life treatment.

“But that's not enough. That's not what advanced care planning is about. Advanced care planning is a process. It's a communication approach.”

He said we need much more nuanced tools for making end-of-life decisions, especially for people living with dementia.

The tools he's helping to develop aim to promote ongoing, evolving conversations, while simplifying the decision-making process.

“It (the decision-making tool) broke down some of the complexity in of these decisions into much more manageable chunks,” he said.

“It's not going to make the decisions for you, though. It doesn't make the decision easier, necessarily, but it helps break down some of that complexity.”

• Read more about the UK project aiming to assist palliative dementia care decision-making here.
• Want more end-of-life resources? Check out The Advance Project.

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