OET Listening Partie C : End-of-Life Dementia Care Challenges

My name's Dr Clare Cox.

I'm a geriatrician specialising in palliative care.

My topic today is an increasingly important issue:

end-of-life care for dementia patients.

The care of dementia patients presents certain problems.

Dementia is a terminal illness and is the third highest cause of death in Australia.

But dementia is different from other such conditions.

It has an unpredictable trajectory

and there can be difficult issues around patients' mental capacity, decision-making and communication.

But, in spite of an equal need for palliative care services,

dementia patients don't always fit the traditional model of such care.

Families often suffer distress because they feel unable to ensure that their loved one's wishes are being respected,

or just don't know what that person wanted

because the discussion wasn't held early enough.

There is, therefore, a clear need for well-funded, patient-centred palliative dementia care

that's available when and where it's needed.

I do a lot of work with Dementia Australia -

an organisation which represents the needs of Australians living with all types of dementia,

and of their families and carers.

It also campaigns on dementia issues and funds research.

Dementia Australia decided it was the right time to examine the issue of end-of-life dementia care,

from the perspective of the consumer as well as from that of the healthcare professional.

It's a timely initiative.

We have plenty of anecdotal evidence,

but not enough hard facts about what's going wrong and why the system's failing.

But the current situation isn't all bad.

Despite the issues I've mentioned,

I've heard some wonderful examples of how palliative care has made a big difference to people's lives.

Things can obviously go badly wrong if this isn't handled well,

but in the right circumstances, people with dementia can reach the end of their lives peacefully and with dignity.

Dementia Australia commissioned researchers to conduct a survey on the end-of-life issues affecting dementia patients.

The survey covered both care professionals, that's doctors, nurses and others working with dementia patients,

as well as family-member carers.

The interest was overwhelming with more than a thousand responses from around Australia.

But what do the results tell us?

Well, the initial results confirmed what we've heard about access to appropriate end-of-life care.

It was obvious immediately that there was a striking gap between the perceptions of care professionals,

and family-member carers about end-of-life dementia care.

For instance, while 58% of family-member carers said that they didn't have access to palliative care specialists,

and 68% didn't have access to hospices,

three quarters of care professionals indicated that people with dementia in their area do in fact have access to palliative care.

This begs the question of whether consumers - that is patients and family-member carers -

might not be aware of services that are available.

Another notable finding of the survey was that care professionals often lack knowledge of the legal issues surrounding end-of-life care.

Some reports indicate that care professionals are at times reluctant to use pain medications such as morphine

because of concerns about hastening a patient's death.

However, access to appropriate pain relief is considered to be a fundamental human right,

even if death is earlier as a secondary effect of medication.

Our survey found that 27% of care professionals were unsure about this,

or didn't believe that patients are legally entitled to adequate pain control,

if it might hasten death.

So perhaps it isn't surprising then,

that a quarter of former family-member carers felt that pain wasn't adequately managed in end-of-life care.

This lack of awareness extends beyond pain management.

The statistics on refusing treatment were particularly shocking.

Almost a third of care professionals were unaware that people have the right to refuse food and hydration,

and one in ten also thought refusal of antibiotics wasn't an option for patients in end-of-life care.

How can we ever achieve consumer empowerment and consumer-directed care

if the professionals are so ill informed?

There's a clear need for greater information and training on patient rights,

yet over a third of care professionals said they hadn't received any such training at all.

It's obvious that end-of-life care planning is desirable.

Discussing and documenting preferences

is clearly the best way of minimising the burden of decision-making on carers,

and ensuring patients' wishes are respected.

Advance care planning is essentially an insurance policy

that helps to protect our patients in case they lose their decision-making capacity.

Even though a patient might believe that loved ones will have their best interests at heart,

the evidence shows that such people aren't that good at knowing what decisions those they love would make

on complex matters such as infection control and hydration.

So, before I go on...