People living with dementia are a growing sector of the ageing community. With the majority of aged care residents living in care diagnosed with some form of cognitive impairment – the risk, rights and autonomy of residents is a complicated issue for them, the staff and their families.

So it was fitting that at Dementia Australia’s “Be the change” conference, this was the topic of the panel discussion.

Facilitated by Dr Susan Koch, the panel spoke about anything and everything when it comes to risk, rights and autonomy.

The panel featured Madeline Gall (CEO Lifeview), Nick Ryan (CEO Australian Aged Care Quality Agency), David Leggatt (Partner DLA Piper), and Anne Fairhall.

Dr Koch asked Nick Ryan, “are we doing well with risk, rights and autonomy?”.

Nick says that “we are in the middle of a significant move in the industry – in particular aged care”.

“The future of aged care in Australia, is fairly and squarely about giving older Australians and seniors much more information about options for care, and not just choice, but also greater control.”

In terms of risk, rights and autonomy, Nick says “if you look at the provision of care, there is a three way conversation between the provider of care, the receiver of care and the families representative.”

When asking the same question to Anne, she disagreed citing her own personal experience, as well as working with people dealing with the system.

“There are areas and certain pockets where it has improved – we may have moved in the right direction but there is still a gap in between what we aspire to and what is happening on the ground”.

“What happens on the ground, does not appear to be what people think it should be,” says Anne, “there is still a long way to go”.

David Leggatt, a lawyer by occupation, said that, “when you take into account the worldwide experience, I have seen dramatic change. The answer is emphatically ‘yes’, but there is much we can do better.”

“The resources going to clinicians, people who have all the education but don’t have the heart and don’t have the engagement to make a change, and if resources focused purely on the theory rather than what people really need, then we are going to start to go backwards”.

“If you have the wrong people in this sector without the heart and endurance they need to make a difference to do the job, then we are going to go backwards at a very rapid rate”.

Madeline, as a CEO said that “coming from a provider’s perspective, then I would say ‘no’ we don’t do it well”.

“It is the balance of consumer rights to make decisions, to take risks – a balancing act between the provider in their duty of care – however, I don’t see duty of care as putting bubble wrap on a person the second they arrive in on the door of an aged care facility”.   

“The question that get’s often asked is, ‘should we allow the resident to do this?’ – which infuriates me. These people are adults. They’ve made decisions all their lives, taken risks all their lives. Who are we to say ‘no you cannot do that’ simply because they need support”.

Anne posed “if a person is at a stage of dementia where they are making ‘risky decisions’, is it risky for the resident? Or for the family?” suggesting that you would never keep someone safe in their own home by locking them in their home and never letting them out.

She says that from her experience, that families either fit in one of two extremes – they either feel that providers do too much, or they do not do enough.

As an insurance lawyer, David said he has dealt with many traumatised healthcare workers and traumatised families that have had an extremely bad outcome.

“One accident does not need a systemic change,” he says, “I have seen so many situations where an insurer says ‘we can’t have that happen again’ because it cost them a lot”.

“The core to safety and to managing risk is for the people in that place and in that time to have the right judgement and the right ability and make the right call at that time”.

“It is critical for staff to have support”, David suggest that more risks happen when staff feel like they are being scrutinised at every choice.  

When questions were open to the audience, one passionate woman spoke up, Val, a woman who was a carer for her husband and was diagnosed with dementia herself.

During the course of the session Val was invited to join the panel of experts, to give a voice to people who have dementia.

When the topic turned to ‘dignity of risk versus’ ‘duty of care’ , Nick said that the “key to good service is connection”.

“If you don’t connect with the family, and you don’t listen to them, then you aren’t doing your duty of care”.

“The best way to manage risk is to listen and action”.

Madeline points out that sometimes it’s the family members who act as the barrier, as many adult children don’t want their elderly parent to fall or hurt themselves.

“The resident themselves is able to communicate, verbalise and make decisions, but then you have the family on the other hand saying ‘no, I don’t want my mother/father doing that’ – so it really comes back to ‘consumer’, but first and foremost the decisions that the resident making”.

Nick believes that “the public perception is that nothing bad will ever happen in aged care, so this question about the dignity of risk versus this perception that bad things shouldn’t and won’t ever occur”.  

Dr Koch closed the panel by asking each speaker, “if there was one right or risk that we should change or should act upon right now, what would be their choice?”

Dr Koch said that hers would be “the right right to die pain free and with dignity”.

Anne explained that “in terms of risk and rights, as we move and push more to be done at home as we all want to stay home longer, carers are at huge risk at the moment and in the future because more of them will be ill prepared for the role that they’re doing and there will be burnout”.

Madeline said, “I want the right to do what I want when I want”, something that she says isn’t, generally speaking, happening right now in this industry.

Val explained that “I don’t want to be taken out of my familiar surroundings into emergency where nobody knows who I am and do everything to resuscitate me.”

“I want my palliative care wishes to be honoured in my room with the staff who know me and love me and my family around me,” Val said, while getting visibly emotional.

David closed with “the right to get rid of dishonest and unscrupulous operators for disability and aged care” – a response that received a roaring applause from the audience.

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