Navigating Palliative Care at Home: A Practical Guide for Australian Families
Navigating palliative care at home can feel overwhelming for family carers supporting a loved one through a serious illness. Many families want to keep their relatives in comfortable, familiar surroundings, yet they struggle to find clear guidance on available services, government funding, and practical care options.
In a recent episode of Conversations with G&G, clinical nurse specialist Karen Conte shared her extensive expertise on community care, system reforms, and emotional support for caregivers. This comprehensive summary breaks down the core findings from the discussion, offering actionable steps for families across Victoria and Australia.
Understanding Palliative Care at Home
Many people assume that palliative care is strictly reserved for the final days of life. However, palliative care at home is a broader approach designed to improve quality of life for both the individual and their family from the point of a terminal or chronic diagnosis.
Specialist Care vs Generalist Care
Specialist Palliative Care: Provided by multidisciplinary teams funded by state governments. They focus on complex symptom management, such as severe pain, nausea, and emotional or spiritual distress.
Generalist Home Care: Delivered by aged care providers who assist with daily living tasks. These services include showering, dressing, meal preparation, medication prompts, and essential carer respite.
"It takes a village to support somebody at home to die at home if that is what they want," explains Karen Conte. Combine specialist clinical oversight with regular in-home care to create a sustainable support network.
Navigating End-of-Life Funding Options
Accessing financial support quickly is crucial when health conditions deteriorate. Under the Support at Home program, the Australian Government offers targeted funding to assist families during critical periods
The $25,000 End-of-Life Pathway
The End-of-Life Pathway provides up to $25,000 over 12 weeks for individuals diagnosed with three months or less to live. This stream allows families to rapidly deploy personal care, respite, and nursing support without lengthy waiting lists.
Families should ensure that health assessors submit equipment funding requests concurrently. Separate approvals are required for items such as hospital beds and pressure mattresses to prevent delays during hospital discharges.
Step-by-Step Advance Care Planning
Advance Care Planning ensures a person's medical treatment preferences are respected if they lose the ability to speak for themselves.
Have the Conversation: Talk openly with family members about personal values, treatment preferences, and fears.
Appoint a Medical Treatment Decision Maker: Formally designate a trusted individual to make medical decisions if capacity is lost.
Complete an Advance Care Directive: Record specific treatment consents or refusals in a legally binding Victorian document.
Distribute the Documents: Provide copies to your GP, local hospital, home care provider, and upload the directive to My Health Record.
Frequently Asked Questions
What is the main goal of palliative care at home?
The main goal of palliative care at home is to optimise quality of life by managing physical symptoms and providing emotional, practical, and spiritual support to both the individual and their family.
How do families apply for the End-of-Life Pathway?
A GP, specialist, or hospital team must complete a medical assessment form confirming a short prognosis. The application is then submitted through My Aged Care for fast-tracked approval.
Can generalist caregivers manage palliative support?
Yes, professional caregivers provide crucial hands-on help with personal hygiene, mobility, companion care, and domestic assistance, allowing family members to focus on their personal relationships.
Key Takeaways for Carers
Establishing palliative care at home early helps families avoid crisis admissions to hospitals and preserves dignity. By combining government funding, specialist palliative services, and dedicated home care, families can fulfill their loved one's wishes in a safe and supportive environment.
Learn more about the program or access resources to support your caregiving journey through the following links:
Full Episode Transcription - 20 Pulling Back the Curtain: Navigating Palliative Care at Home Feat. Karen Conte
Giselle
Hello and welcome back to Conversations with G and G. Today we are having a vital, deeply important conversation, one that touches many families but can often be very difficult to stop.
Joining us is Karen, a palliative care nurse specialist. Karen is here to help us understand what palliative care really means, how families can access support at home, and how to navigate these incredibly profound decisions. Karen, thank you so much for joining us today.
Karen
Thanks. Giselle.
Giovanni
Fantastic. So good to have you here, Karen. And can you let us know a little bit about your journey? And obviously, we know each other personally since 2018, when we started together, on the Home Instead senior care journey. Yeah. Tell us a little bit about that. And, and prior to that as well.
Karen
Well, I think it's important to say I grew up in Geelong. Go the Cats.
Giselle
Go Cats.
Karen
And I moved to Melbourne when I was 18 to start my nursing training, and I moved straight into oncology after my basic training and just loved it. And then from there, my journey went into palliative care. So, I won't say how many years ago that is, but I've been working in palliative care for many, many, many years and specialised in the area.
Did a masters in it, became a teacher in it, and then became endorsed as a nurse practitioner, which is the highest level you can get to in clinical practice for nursing and worked in community palliative care for 17 years before moving into more management and project management roles. And then I met some people from Home Instead along my journey in palliative care and was very impressed with their ethos, and learning about the business and thought, well, I think that's something that I could do as well.
So I ended up buying a Home Instead franchise. In those days it was called Home Instead Senior Care, then we dropped the senior care and it became Home Instead, then we changed to Dovida, which is where we are today. So I owned and managed that business for six and a half years before selling it back to the company to become a corporate office, and then moved into a national palliative care role for Dovida to develop a model for all of our offices around Australia to be able to provide really good quality palliative and end-of-life care for our clients.
Giovanni
Fantastic. What a career. Wow.
Giselle
You have seen a lot of changes from how oncology and palliative care was done, earlier on in your career to what we're seeing today. Is there something, a major, major thing that you've noticed?
Karen
Well, the funny thing is, and I've been recently going to some palliative care conferences around the country, and so running into lots of colleagues that I've known for decades, because once you're in palliative care, you tend to stay in palliative care.
It kind of gets into your blood. And becomes a passion. And I think listening to a lot of the presentations at conferences, in some ways it was a little bit disheartening because I was saying to my previous colleagues, we were having these same conversations 30 years ago. So in some ways things haven't moved very much.
And in some ways it's become even a little bit more challenging because GP’s rarely do home visits these days.
Giselle
Yeah.
Karen
And they don't see a lot of palliative care clients. So we really do rely on our specialist palliative care community services very much. But they are also feeling the pinch in terms of resources. And that's where I think home care providers like Dovida need to come in and really upskill our staff and fill that gap.
Giselle
How does someone get involved in a specialist like if there is someone, that has a loved one that's in palliative care, how do they go about getting in touch with the specialist service?
Karen
So they may be introduced to palliative care in the hospital if they happen to be admitted to hospital. So a lot of acute hospitals have what they call a palliative care consult team.
And so there's a group of doctors, nurses, sometimes a social worker in that team that will go and see appropriate patients in the hospital, and if, if appropriate, necessary, would refer that person to a community palliative care service. But a client or a patient or family member can refer themselves to a palliative care service in the community as well.
There are certain criteria that the palliative care service will look at and decide whether that person. It's the right time for them to be part of a community palliative care service. Or whether, you know, they actually meet their criteria and that can differ between services. So that's where it's a little bit challenging. But the first step would be to look have a look and see who your local palliative care service is.
And there's an organisation called Palliative Care Victoria, which is the peak body for Victoria for palliative care. You can call them, you can have a look on their website, and they will let you know who your closest palliative care service is. And then it's a matter of just giving them a call and having a chat to them and saying, are they the right service, and is it the right time for that person to be involved in community palliative care?
Giovanni
What a great resource to start off with. And Karen, let's take a step back and let's get back into the definition of palliative care. I know there could be some confusion out there.
Karen
There is.
Giovanni
And also, I heard, you know, end of life as well could be coming into the picture as well. Can you talk us through?
Karen
Sure. So palliative care really is an approach to care, I guess. So it's it's looking more at the quality of life of the person and the family. So the person and the family of the unit of care, not just the client or the patient. And it's more focused on the person's quality of life than the disease process. So that's the subtle shift.
Giovanni
Maintaining comfort and dignity.
Karen
Yes. That's right. So we're not looking at treating the disease. We're looking at managing the repercussions of the disease, I guess, so like the symptoms. So symptom management is a really big part of palliative care as well as the spiritual, psychological, emotional and practical aspects of palliative care. It can be sometimes people get confused with palliative care and end of life care, because they think palliative care is just for the very last stage, the dying stage.
But palliative care can start years before that. The challenge is that we think about palliative care as a specialist area and getting in touch with a specialist team. Years out from when people have got very long-term conditions, the palliative care service may not accept them in those early stages unless they have major symptom management issues that need to be dealt with, and then they will bring them on, stabilise them in terms of those issues, and then discharge them from the program again.
So that's one of the changes that I've seen over the last few decades. When I worked in community palliative care, we would keep patients on our books, if you like, for years. So for example, of a patient with motor neuron disease, we would we could have them on the books for five years from diagnosis to death.
But nowadays that doesn't happen. They don't have the resources for that. So they would bring that person on, stabilise their symptoms, put supports around them and then discharge them. So I think that's where a home care provider like Dovida can be that continuity because we're in there for that five years. But the palliative care services can't be in there for five years.
Giselle
Yeah.
Karen
And I think there's also we can think about palliative care as specialist palliative care and generalist palliative care. And what we're trying to do is to upskill our staff so they can provide that really good generalist care and know when we need to bring the specialist services in again.
Giselle
With this, specialist service. What's the cost to the client or is there any funding in relation to accessing that service?
Karen
So the specialist palliative care services are funded by the state and federal government. So there's no cost at all to clients and families. There may be some costs associated with equipment hire. But other than that, there's no charge for the actual service of the palliative care service.
Giselle
And then any medications that the client might be on and just the usual.
Karen
Yes.
Giselle
Okay. Yeah.
Karen
But now since the 1st of November under the new Support at Home Program, the government is funding end-of-life care for people over the age of 65 on what's called an end-of-life pathway.
And that provides $25,000 over 12 weeks for people to access in-home care, such as the services that Dovida provide. So it's not to fund specialist palliative care, it's to fund aged care services. Now, we have started using that end-of-life pathway, and it's been actually really good. It's probably, I would say the diamond in Support at Home because there are issues obviously with the Support at Home program. But the end-of-life pathway is working quite well. People are able to access it very quickly.
Giovanni
Great news.
The median time from putting in an application to actually getting the funding is 15 days, but we're finding people are actually quicker, and even quicker than that. So it's helping people get out of hospital that wouldn't ordinarily be able to get out of hospital.
It's providing some support and respite for families. One of the issues that we're having, and we have alerted the government to this of the department is around accessing equipment, because they don't always get the assistive technology or equipment funding approved at the same time as the end-of-life funding. And this is causing issues because often people need to go home with hospital beds and air mattresses and wheelchairs and the like.
So that is something that the department are currently reviewing and looking at. So we're hoping that that is going to be improved in the future.
Giovanni
So, Karen, to clarify, does that mean that they will be approved, a bucket of funding for the care itself as opposed to equipment? And ideally, we want to see that and the coming together at the same time.
Karen
Yes. So the end-of-life pathway does not include funding for equipment, it is for care. And then we have to get separate funding for the equipment.
Giovanni
That's an important clarification. That's where that bit of delay.
Karen
Yes. And I think if families and clients have anything to do with the assessment when they're being assessed, they need to say, “what about equipment?” To remind the assessor to approve that bucket for equipment at the same time.
Giselle
Yeah, that's a good tip.
Giovanni
Yeah, I see. And is that a little bit delayed? The funding for the equipment is it naturally takes longer or why it doesn't happen the same time?
Karen
I think it's just a confusion in the sector. The assessors don't sometimes realise that they need to approve the funding for the equipment at the same time as the end-of-life pathway. So if we have anything to do with assessors, we need to also be getting that message out to them. That's really important. Often when somebody is coming out of a public hospital in Victoria, they can access four weeks of equipment hire. Not every hospital, but most hospitals, fund that. So that helps with that little bit of leeway for a few weeks while we're trying to access the assistive technology funding.
Giovanni
Mmm, understood.
Giselle
And this funding is separate again from that Support at Home program, the regular program where people can get the domestic assistance and personal care. So this is also a different funding bucket from all of that.
Karen
It's a different funding bucket. But it's also important to remember that if you're already under Support at Home or a home care package as a grandfathered client, that funding stops when the end of last pathway funding starts. So it's not in addition to what you're already receiving, it is instead of.
It is the highest level of funding you can get under the Support at Home. If somebody outlives that funding in 12 weeks time, but there's still money, still a little bit of that $25,000 left. They can continue to use it for up to 16 weeks, and then after that period they will revert back to their original package.
And it might be that if that package isn’t high enough, their care manager will need to put in for a support plan review to get a higher package. That has been a bit of an issue as well with people outliving the 12 weeks because we can't we don't have a crystal ball to just say when somebody is actually going to die.
The government has also listened to the voice of the sector, and they are making a change to that. The change won't come in until probably February next year, but people will be able to access a second round of the 12-week end-of-life funding from around February next year.
Giovanni
Another 25,000?
Karen
Another 25,000.
Giovanni
That's really great news.
Karen
It is really good news.
Giselle
That is good news. So if someone does not have a current package, they can apply for the end-of-life pathway as well? So it's not for people that are already in the system.
Karen
Absolutely.
Giovanni
And that's the good news. That's the benefit of this program. It can happen really quick because at the end of the day, palliative care can just turn out to be.
Karen
Things you can change quickly.
Giovanni
Yeah. Really quick.
Karen
Yes. So people can who may if they're over 65, they've never needed any support at home before. But now find themselves unfortunately, very ill, with a short prognosis. They can access this funding to help them, help support them at home. So a lot of that is happening in the acute hospital system, the doctors are filling out the form that's required to get people home with this funding. So that's working really well, actually.
Giovanni
It's great. Let's talk about the services. You mentioned before that they can access care. Can we talk about some examples of case studies of, what good care looks like and what will be, good for people to know?
Karen
So it's important to realise that this funding, as I said before, isn't for palliative care services; it's for in-home services.
But we would very much like to work with the community palliative care service. We sometimes say it takes a village to raise a child, but it also takes a village to support somebody at home to die at home, if that's what they want to do. And not everybody wants to die at home. But about 70% of people say that they would like to die at home.
And again, that's one of those statistics that hasn't changed over three decades. About 70% of people say that's where they would prefer to die, but only about 14% actually achieve that goal.
Giselle
Wow.
Karen
And that has not changed for decades.
Giovanni
Oh, let's see if this program can move the needle a little bit.
Karen
That's what we're hoping to certainly what we are. I remember from my specialist palliative care days that one of the big challenges was that when somebody would say they wanted to die at home, the family wanted that to happen for them, but the family would get exhausted providing that 24-hour care. And so the person would end up going into hospital and dying in hospital, and then the family lives with all the guilt that they haven't been able to achieve the promise for the client. And we always say to families, don't make that promise because you don't know what's going to happen in the future.
Giovanni
We need to manage that expectation upfront.
Karen
Exactly, so we would work with the family and the client to say we will try everything we can to achieve that goal, but we can't promise 100% that that's going to happen because we don't know what the future is going to tell us.
Your main carer, family carer could become ill themselves and you know, so you just don't know what's in the future. So important not to make those promises.
Giselle
Yeah absolutely.
Giovanni
Very good. And now what about the care? Let's talk about that.
Karen
Yeah. So what the specialist palliative care service provides the symptom management. So they’re absolute experts in pain management, managing things like breathlessness, nausea, fatigue, those sorts of symptoms. So that's their specialty area. They're also very good at providing emotional support to the family and to the client. And they often have a multidisciplinary team. So they'll have specialist nurses, doctors, sometimes an OT, usually some sort of emotional support like a social worker or counselor.
They also provide and are funded to provide 13 months of bereavement support once the person has died, so the family can access that bereavement support. So they’re really the specialists, lots of education and lots of support. And usually most services have a 24-hour number that the families can ring if they get into any strife in the middle of the night.
Giovanni
And that is again separate from the Support at Home program.
Karen
Correct. So that's state federal funded.
Giovanni
Yep.
Karen
And at no cost to the family.
Giovanni
No cost. And what sort of, how much resource can they allocate to each family?
Karen
It really depends on the service. And again, it works a little bit differently to when I worked in specialist palliative care, where the resources weren't as tight as they are now.
I think everybody's trying to get into a specialist palliative care service. And they just simply cannot see every person that's dying in Australia. And the argument would be that they don't need to, that most people die a comfortable, peaceful death at home or wherever. And, they have family around them to support that process.
So the specialist services are really for those complex patients who have complex symptom issues or complex family issues that need to be supported. So.
Giovanni
So you need to be eligible for that particular service, I would assume.
Karen
Yes.
Giovanni
Is there like an assessment done by a GP or a referral?
Karen
So a GP could refer to a service or the family can refer them themselves.
Giovanni
Right.
Karen
The client can refer, the hospital can refer, and then the palliative care service would do a bit of a triage over the phone.
Giovanni
Like an intake process. Yeah, yeah, I see.
Karen
And ask lots of questions. If they think the person would benefit from the service, then they will go out and do an assessment. And as I said before, they may keep the person registered with them for a short time, just to stabilise, say if the person has pain issues, stabilise that pain, and then they would exit the care and come back in again at a later date if required.
And then alongside that, the home care providers like Dovida would be providing that practical hands-on care that the special services don't provide. So personal care, assisting with showering and dressing, feeding, medication prompts, domestic assistance, importantly, respite for the family so the family carers can get out and have a break and know that there's somebody in the home with that person caring for them during that time.
Giovani
And even that companionship aspect is, very, very important at that time. Having someone with you that knows you, maybe you build a good relationship.
Karen
Absolutely. I think that's a really good point. And I think getting in earlier rather than later is really important for these home care services, because it does allow those relationships to be built up while the person is relatively well.
And then the care team go on that journey with the person and the family.
Giselle
Yes. And, and it would be wise probably to recommend people to use those home care services alongside the specialist service. So it's not that you need to use one or the other. Using them both at the same time and applying and putting through those applications in early and getting in that system, when they can.
Karen
When they can. Yeah. The criteria for the end-of-life pathway funding is that a person needs to be deemed to have less than three months to live.
Giselle
Yeah.
Karen
That's a hard judgment call.
Giselle
Yes.
Karen
For anybody. We don't know. We don't have crystal balls. It's a very difficult call for a GP to make. The hospital team may have a pretty good idea if they've been seeing that client over a number of years.
And they do tend to be making that call quite often. Sometimes the palliative care services don't want to get involved in the end-of-life funding. Some do, some don't. And so that's again, you're going to have to find out from your local palliative care service what their stance on that is.
But it is a difficult, a difficult prediction to make. And that's why that extension of the end-of-life pathway for another 12 weeks is really important because it's very, very difficult to make that call.
Giovanni
Great news in that sense. There is more funding.
Karen
Yes, really good news.
Giovanni
Yeah. And Karen, let's go back. Into the type of services again that our home care provider, can provide during this very difficult time. We spoke about, having a clinical nurse as well as part of, the team. But there's also a misconception that you don't necessarily need to have a clinical nurse there with you.
Karen
Correct.
Giovanni
And, yeah. Can we talk a little bit about that? Because a caregiver, for example, doesn't need to be a nurse to provide good quality care.
Karen
Yeah, that's right.
Giovanni
That companionship, that sort of support that the family needs?
Karen
Yes, for most people that support can be done by a generalist service. And it doesn't need to be a nurse. When we get to looking at medications that might be needed to be given to the person, normally the family is trained up to do that. Even if there's no home care provider involved, that's what a community palliative care service would do because they can't be there 24/7 either.
So they would always train the family up to provide the medication side of the care. And then the caregivers are, very well equipped to provide that support and practical care and at Dovida we are upskilling our staff even more so that they can be there to support the family, also to look after themselves because it's emotional work for them, particularly if they've been looking after that client for many years.
That can be quite emotional for them. So it's really important to support them as well. But we are upskilling groups of caregivers in caring for somebody who's bed bound and, in the last stages of their life.
Giovanni
Absolutely. So important.
Karen
Yeah.
Giselle
Karen, can you talk to us a little bit about advanced care planning, what it is, and at what point in someone's life should someone think about putting in place an advanced care plan?
Karen
Good question. I think advanced care planning in some ways is the foundation of really good palliative care. And anybody can think about advanced planning at any time in their life.
Giovanni
True.
Karen
But it's really important for people who are getting older, certainly for people who have chronic diseases, people who certainly have been given a terminal diagnosis, they’re probably the three areas that, people should really hone in on advanced care planning.
It's important to say it's a voluntary process. So a little bit like making a will. It's a really good idea and makes things a lot easier for your family. But you don't have to do it. It's not a legal requirement. So it is, voluntary, but it's about caring for your family actually, because it makes life so much easier for them. It's not an easy topic, and none of us want to think about our own death and our own mortality.
But it's, it's just about having a conversation about what's really important to you. And it means that you have a voice even when you can't talk, and that your preferences and wishes are known by your family and your health care team. So you don't necessarily have to make a legally binding document. That's not the most important part of advanced care planning.
The most important part is having the conversation with your family so they know what your wishes are. Some people are very, very, have very strong ideas on what they want and what they don't want in terms of medical treatment. And if you have really strong views about that, then it's most likely beneficial for you to make an advanced health directive or advanced care directive. They're called something different in every state in Australia.
So that you actually have your wishes written down. It's a legally binding document, so you need to be careful what you put in that document and.
Giselle
Can you change it if you change your mind?
Karen
Absolutely. It's any time you can revoke one and make a new one, and it would be a good idea to discuss it with your doctor as well and your health care team so that it's appropriate.
But you don't have to go that far if you don't want to. You might want to think about, appointing a substitute decision maker, which we used to call the enduring power of attorney, now called a substitute decision maker in Victoria. And that again means that somebody that you trust will make those decisions for you.
Only when, it only comes into play, when you can't speak for yourself. So if you're unconscious or for some reason you're having an anesthetic and you can't speak, then your family member or friend, whoever you trust, that you've appointed, can make those decisions on your behalf. But if you've appointed that person, you must make sure that you've had a conversation with them and they know what your wishes are.
So they're the really important things. If you haven't done any of those, that paperwork, but you've had the conversation, the doctors will speak to your what used to be called your next of kin. But there's a hierarchy of people they will speak to. And if that's your spouse and you get on really well with your spouse and you think your spouse will make good decisions for you, then you can leave it at that if you want to.
But sometimes people are estranged from their spouse, and they don't want that person to be the spokesperson. Well, then it's important that you have a substitute decision maker so that the doctors aren't just going to follow the hierarchy. So it depends very much on your situation.
Giselle
Yeah.
Karen
But having that conversation is really important.
Giovanni
Yeah. It's all about planning, thinking ahead, and being in control of your own destiny. Really?
Karen
Absolutely, yes.
Giselle
So for someone that wanted to get started, where do they go? What are they doing? Who do they see? Who do they need to get involved? Do they need to see a lawyer? Do they need to jump on a website? What should they do?
Karen
I think probably the best place to start would be a website. And it's the Advanced Care Planning Australia website. That has got all the information you need about advanced care planning, and you just go to Victoria, and all the documentation that is relevant to Victoria is there. And also lots of instructions about how to how to fill out the forms. Certainly at Dovida you can speak to your care manager as well, and we are training our care managers in having that conversation with you so they can help you in the right direction.
And then it's important for you once you've had a think about it. And if you want to do the documentation part of it right, write down what you can and then go and see your doctor, whether that's your GP or a medical specialist that you see regularly. It's important to have those conversations with a medical person.
Giselle
And then that document just sits with the GP then, in that case?
Karen
Ah no. So it's, and this is one of the challenges of advanced care planning, or the advance care directive, is that there's no one place to keep it and there's no one place that everybody looks for it. There is My Health Record that you can upload it to. And that's a really good idea to do that. But what we say is that everybody that's involved in your care, including your family members and your substitute decision maker, needs to have a copy of the latest advanced care directive and your home care provider as well. So it just means that you might send one to your GP, to your closest local hospital, have it on my health record, have your substitute decision maker have it, put it up on your fridge, so and then the and have a list of where you've sent it because if you do change it you need to send it out again.
Giselle
Yes.
Karen
So that's one of the challenges about the documentation around advance care directives.
Giovanni
The portability and the interoperability as well of all these different systems and how you access the information.
Karen
Yeah.
Giovanni
I guess it's a good idea to just print it off and, and save it, you know, file it in a safe place.
Karen
Have it in your handbag, if your a woman.
Giovanni
Yeah.
Karen
Or, your man bag. Yeah. If you go to the hospital, take it with you. Make sure that your family member or carer knows where it is, and can make sure that it's given to an ambulance if they ring an ambulance or goes to the hospital with you.
Giselle
Yeah.
Giovanni
Have it ready.
Giselle
Yeah. That's great information.
Karen
So I've seen it work incredibly well. But we know that a lot of people don't have the paperwork.
But again, as I say, the conversation is probably the most important part. Where it's a really good idea to have the documentation done, perhaps if you have a large family, you know, you might have six adult children, and they all have different ideas on what mum or dad should have in terms of treatment or care.
And so this actually stops a lot of family conflict because you can look at the advanced care directive that's been written and say, well this is what mum wanted. She's written it down.
Giovanni
Yeah.
Karen
She didn't want to go to ICU. She didn't ever want to have a tube down her throat. She didn't want to have renal dialysis. She's actually said she doesn't want any of these things because when the son from Italy flies in, who hasn't seen mum for five years, comes in and says, I want mum to go to ICU, and you can say, well, you might want mum to go to ICU, but this isn't what mum wanted. So it actually helps with a lot of that family context.
Giovanni
So many benefits.
Giselle
Do you have any last tips for family carers or people that are going through this? Any advice, final words of wisdom?
Karen
I would just say think about a palliative approach to care early on. If you have a chronic progressive illness, start having those conversations early with your medical staff and your family, because often those conversations aren't raised unless you or your family raise it.
It's a funny thing, but I think health professionals think that if it's important, the person themselves will raised it and the person thinks, well, if it's important, the doctor will raise something with me. So nobody actually talks about what's going to happen down the track. We're just managing this chronic illness day by day, but we're not talking about the future and where we're heading with this illness.
So I think, you know, bring it up yourself is probably important. So start those conversations early. Embrace the support that palliative care and home care services can provide. Because for a family, it gives you more time to be the family rather than be the carer. And it gives you back some really precious time with that person that you may not have otherwise.
It also allows people to stay at home much longer, which is where most people want to be, and less hospitalisations which nobody wants to be stuck in a hospital bed. So if you have that support team around you early, it will stop a lot of that bouncing in and out of the hospital unnecessarily.
Giovanni
Absolutely. And the provider as well has a very important role in this. Can you talk a little bit about the role of the provider if someone has a Support at Home package?
Karen
Yes. So I think as I said earlier, I think that's where the continuity lies. Because you can have your provider for, you know, five, ten years, and they're that constant thread that they get to know you so well as a person and they get to know your family so well, they can advocate for you.
But they can also coordinate your care and think about things that you might not have even thought about and make suggestions to you. And look, I’ve worked with so many families who have said, no, no, no, no, no, we don't want that, and we don't want that, and we don't want that piece of equipment. And it's hard, I think, initially to welcome strangers into your home. You know, we're all private, and our homes our sanctuary, and we don't want a whole lot of people coming and going.
But what I've heard people say, you know, a month down the track is I wish I'd done this a lot earlier. So I think that's really important because you will have a care manager or in the new terminology, care partner, assigned to you, who will get to know you so well, and, and they will know what resources are available to you that you may not have even thought of.
Giselle
Yeah.
Karen
So I think it's really important to start that process early.
Giovanni
And embrace all the support you can, you can access to.
Karen
Absolutely. Yeah. Because you're doing a favor to the person that you're caring for. You're actually doing them a favour to get that support in early for yourself and also for them. You won't regret it.
Giovanni
Fantastic.
Giselle
Amazing. Thank you so much for joining us. I think we've learned a lot, and I think it's a very important conversation that needs to be had. So thanks for providing all your knowledge and your years of experience.
Karen
It's been a pleasure.
Giselle.
Thank you
Giovanni
Thank you.
Karen
Thanks, Gio, thanks, Giselle.