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Palliative care: know the myths

PCA chief Yvonne Luxford sets the record straight as the sector comes into the spotlight. 

Palliative care was launched onto the world stage on October 12 for World Hospice and Palliative Care Day, an event dedicated to celebrating and supporting hospice and palliative care around the world.

This year’s theme ‘achieving universal coverage of palliative care: dispelling the myths’ was aimed at correcting some of the misconceptions people have about this area of practice and associated services.

Despite the statement in the productivity commission’s report into caring for older Australians that palliative care is a core business for aged care, that’s not always the case.

The CEO of Palliative Care Australia, Yvonne Luxford, sat down with Nursing Review to help bust the major palliative care myths hindering access to services for Australian elderly.

Nursing Review: What are major palliative care myths that people working within the aged-care industry need to be aware of?

Yvonne Luxford: One of the big myths for aged-care workers is that palliative care is only for the very end of your illness – when you are just about to die.

There is a lot of confusion between terminal and palliative care; however, palliative care can kick in many months, in some cases even a year or two, before somebody dies. Obviously someone receiving palliative care is going to have a terminal illness but it doesn’t mean that it is restricted to people who are imminently dying.

Unfortunately, the way you can apply for the palliative care loading to the ACFI (Aged Care Funding Instrument) kind of emphasises that it is just for end-of-life care but that is not what it’s about at all. In fact, you can receive palliative care while you are still receiving active treatment – a lot of people don’t realise that either.

Another area of concern is that people often don’t have, or don’t receive, enough education in their training programs about the use of opioids and other medications. Often they are concerned if they are giving people opioids they could become addicted.

However, opioids – when used properly for palliative care – are a really important pain management tool. We shouldn’t carry over our concerns about the misuse of opioids into a treatment regime where it is very important.

Another important myth – and this is one on the (World Hospice and Palliative Care Day) website – is that you can get palliative care only in a hospital. You can get palliative care in any setting whatsoever.

Whether it’s in your own home delivered by a primary care team, like a GP or community nurse, or by a specialist team that is coming into your home. And your own home can either be your physical home that you have lived in forever or your aged-care facility.

Both of those are your home – and very good palliative care can be delivered in your aged-care facility that would usually be under the authority of your GP, but it would be managed by the staff at the facility.

Another incredible myth that needs to be addressed is that palliative care is only for people with cancer. Most people who are in an aged-care facility – they are not dying from cancer. They are likely to be dying from chronic diseases or they are simply old and frail.

NR: What is the state of play in terms of how many elderly people have access to palliative care when it is needed?

YL: We don’t really have any data around that. What we do know from the AIHW statistics that were released last year is that less than a quarter of the people who died in aged-care facilities had the ACFI palliative care loading accessed for them.

That doesn’t necessarily indicate they weren’t receiving palliative care but if they weren’t getting extra funding, it certainly indicates they probably weren’t receiving the best palliative care they could have been. So that’s one mechanism where we can see that people aren’t necessarily receiving all the care they should be.

The other way we know that they are not [getting the best] is through anecdotal evidence. There are some pretty terrible stories of people receiving care in aged-care facilities that the staff may believe [is] good but in fact they haven’t been keeping up to date with the latest developments in palliative care or their educational program hasn’t really contained a lot of palliative care in the first place, which is always a problem.

Another way we can tell that not enough people who should be receiving palliative care [are getting it] is through the ABS stats on the number of people [who have died] in Australia, which isn’t just old people obviously.

We know that in 2011 there were about 147,000 people who died in Australia. And going on the latest research that’s been done of developed countries, that tell us that about 107,000 people would have benefitted from access to palliative care.

Yet the AIHW stats tell us there were only just over 33,000 hospital separations for people receiving palliative care. That’s inpatient don’t forget – so we have to assume there was also quite a bit delivered in the community.  But even if you are generous, you are still seeing that half the people who could have benefitted from palliative care didn’t receive it. They didn’t have access.

NR: What can the industry do to bridge this gap?

YL: I think the industry needs to absolutely insist that every single person working in aged care is well educated in all aspects of palliative care. They also need to adopt more programs that prepare everybody in the facility for resident death.

At the moment, death can come as quite a surprise both for the staff and for other residents and the family. [The idea is to] think about whether you’d be surprised [if a person] died – and then put plans in place so that everybody is aware and can plan for that death. There are a number of programs that support that kind of planning.

One of them has been developed in north-western Tasmania and has now been rolled out in Melbourne and Adelaide as well, called Living Well, Dying Well. It is based on the Gold Standards Framework from Britain and very well adapted to Australian aged-care conditions.

Another thing that will help is having advance care plans in place. If we can encourage people – and it’s voluntary, you can’t force someone to have an advanced care plan – to think about what they want at the end of life and make sure that staff understand what’s appropriate, that it’s not always appropriate to rush people off to hospital. In some cases yes, it is important, but in a lot of cases it is definitely not. It is more important that you keep them in their own home, keep them comfortable and allow them to die a natural death.

NR: What are the most detrimental effects for someone if they don’t receive palliative care?

YL: One is the person’s pain and other symptoms may not be well controlled – we would hate to think people weren’t receiving the care they could be receiving.

Another problem is that they may be sent to the emergency department and have very aggressive treatment, which is really unnecessary and inappropriate in their circumstances. It could be that the situation of their death is quite traumatic for their family and loved ones. Even for the staff – if someone is in pain and that pain isn’t being well managed that can be really traumatic for those around them.

And not only to the extent that they are conscious their loved one’s in pain but also they can feel great guilt afterwards that they weren’t able to make things better.

Put simply, palliative care is a human right and we should be doing everything we can to ensure that everybody who needs palliative care receives [it] in the location of their choice as much as possible.

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