John: Now something just a bit different tonight
I know there's an organization called CarerHelp which is an advertiser on the station here and I’ve heard them talk about this and it's about carers.
And I know a lot of you talk about carers in different contexts so for insistence it might be you're looking after your parents. It could be in some cases parent looking after children or grandchildren and you are a carer and we don't do enough for carers but what about someone who's suddenly plunge in a situation of being a carer for someone who's terminally ill it could be a partner, could be a friend could be a member of your family.
Where you go and where you find information. That's what this new CarerHelp is and it goes to that question of palliative care is something we… you shy away from it; you don't talk about it and my instinct is whenever you feel that way you think Ok well, I do want to talk about it.
Professor Peter Hudson from the university of Melbourne, he's a project leader for carer help, he joins us on the line now.
Professor good evening.
Peter: Good evening John, and thank you very much for this opportunity.
John: Am I right, people can suddenly find themselves looking after someone who is terminal ill and they’ve really got not much of an idea of how to go about it?
Peter: Yeah, you're absolutely correct John, So CarerHelp is Australia first comprehensive online resource dedicated to family carers who are looking after someone who is at end of their life.
We know that most family carers are quite frightened by the prospect of supporting a person in approaching end of their life is one of the biggest most important challenges however face.
And as a nation, however we are typically reasonably well prepared for birth but for most part, you know, fairly poorly prepared for death.
So CarerHelp tries to address this offering reliable information that is relevant to the specific needs. So Family carers who is now to somebody who is approaching the end of their life.
John: I am imagining, look I haven’t look through the information, but I am imagining some of it would be helping people to know what kind of conversations they can have and what they can discuss with the person
Peter: Yes indeed. So we know that one of the biggest challenges for family carers is they typically feel unprepared for the roles and they're not receiving often adequate support.
About 14 percent of Australians want to die at home. Sorry the overwhelming majority Australians want to die at home but only 14 percent do and that typically because of lack of support for family carers and we know that the family carers
want to know typical things like what to expect when the terminal illness progresses, how to recognise when death might be close. Some of the practical aspects supporting someone who is actually dying and what to do after death including some of the legal consideration as well preparing for funerals and bereavement support which is so important as well but often an area that under explored and under supported.
So the communication as you raised John is absolutely crucial and CareHelp assists in this regard by equipping family carers with some tools and resources. So they can start having conversations with the person they’re looking after but also with extended members of the family also with health carer professional about their needs, about their key priorities. Hopefully they can be addressed.
John: So even one bit of what you just said, and I am kind of immediately shy away
from wanting to explore it, but I really should that when you said helping people know what to do when somebody is dying.
Peter: Yes, because this is an area that is foreign to most people and for many family carers they’re isolated, they're the ones that are home often looking after somebody coming toward end of their lives. Many family carers would have some support but that support is not necessarily available 24 hours a day So a lot of family carers doing this in very isolated way and they need a chance to be able to better prepared for this role and be able to access resources and tools to help them, particularly when a person is approaching last day of weeks of their life.
John: Yeah if the person says what is happening, I mean, they are asking, how do you deal with that? Cause, some of the answers going to be a bit sophisticated. You won’t stop there?
Peter: Indeed and I think the key thing or feature about CarerHelp is that it provides suggestions in term of some key comments and responses to common questions that people might ask as they are approaching the end of their life, but also provide resources regards to who to contact if the question you find difficult to answer.
And some cases, obviously health professional support is needed to help guide the carer so that they can be clear of what is actually happening at this particular point of time. And to confirm that the person who is looking after is actually getting very close to end of their lives. So, they can be as prepared as possible.
John: So, someone seriously ill and they towards end of their life, they can opt to say look I like to stay at home with my partner, with my children. They like that as well, is it possible for that to happen in quite a few circumstances? Obviously not in all, but is it possible?
Peter: Absolutely, so Australia has got one of the best palliative care services in the world, however, there are large number of patients and family carers who are unfortunately still missing out on the support that palliative care can provide, so when special palliative care involved, umm, usually the support provider to patient and families is exemplary and that choice to actually live and die at home can be upheld wherever possible with the resources the special palliative care can provide. But unfortunately, as said, a lot of Australians are missing out on access to palliative care.
John: Ok, look, there is a whole range of organizations that are involved as well
You know, I just can't list them all but I am looking here Parkinson’s Australia, Dementia Australia, MND, which is, just wicked disease for which it doesn’t seem there is any curer at the moment. There is whole range of it here. Of course, Cancer and lungs, all of the various elements that decline people's lives. So, this has been put together in council of all these other organizations, the toolkit so people can get on there, they can have a look and as you say 14 percent of people who wanted to die at home end up dying at home, is that right?
So, there's a lot that would prefer to stay at home for those last days.
Peter: Sorry, just to clarify, the overwhelming majority of Australians would prefer to die at home, but only 14 percent do at this moment. (I clarify for that).
Typically, because their family carers are not properly supported and often because they don’t have access to palliative care, which they should.
John: Alright, Yeah, they should of course, and this is a step in that direction with CarerHelp, which is available. It's an online website and all the information is?
Peter: That is correct, so carerhelp.com.au is free to access and we encourage all family carers who are in the situation looking after somebody towards the end of their lives to access this, and we hope this going to be very valuable tools to assist them as I have said, a very complex, very challenging responsibility and hopefully this going to be partway to supporting them in this really really difficult role.
John: Professor, I appreciate your time tonight, thank you so much.
Peter: Thanks very much John.