Larry Sullivan: It's National Palliative Care Week, an annual event raising awareness of palliative care in Australia. The theme this year is "What Matters Most”. But what exactly is palliative care and what does it entail? Well to find out more, I have Tracey Silvester, who's the executive manager of Envigor, on the phone. Tracey, welcome.
Tracey Silvester: Thank you.
Larry Sullivan: Tracey, tell me about National Palliative Care Week and what it aims to achieve.
Tracey Silvester: I think the whole idea of National Palliative Care Week is to really promote the idea of palliative care as being a genuine form of care for people throughout their lives, but it's also to prompt people to start having discussions either with themselves or with their loved ones about what their choices might look like if they were to be given a diagnosis of a life-limiting illness.
Larry Sullivan: Tracey, what is palliative care?
Tracey Silvester: Well palliative care, a lot of people think of palliative care as sort of that really end of life care when someone's eminently about to pass away. What palliative care actually is though, and I think the philosophy of palliative care – and in fact if you're providing really good palliative care, this is what you achieve – is to provide somebody who's had a diagnosis of a life-limiting illness and sometimes actually the assumption I think that historically has happened is that those life-limiting illnesses sort of sit with the cancers and things like that, but they could be things like somebody who's got an airways disease that perhaps is no longer able to treat it or a heart disease. So those people can receive palliative care as well.
The idea with great palliative care is that the person who is receiving the palliative care has a quality of life and is able to exercise their right to choose how they want to live their life in the last months, weeks, years of their lives. So really good palliative care isn't just about that end of life care and that's imminent. It actually starts pretty much from the moment that somebody has a diagnosis that the condition that they have is not able to be treated or cured anymore.
Larry Sullivan: Tracey, it's often said that delivering good palliative care is about taking a holistic approach. Can you tell me about that?
Tracey Silvester: Well the idea is that once somebody doesn't require active treatment medically anymore, it's really important for there to be a team approach. That isn't just health professionals. That can be people's family members, the community that they live in. So it's really actually thinking about a holistic thing, and it's not just thinking about somebody's physical issues either. Certainly symptom management is a really core component of good palliative care. If you're not getting your symptom management right then it makes it really difficult for the person to have a good quality of life.
But it also means things like looking after their spiritual wellbeing, dealing with the conversations about death and dying, dealing with "What do I ... How do I want to spend my last however long it is on this earth”, and also then dealing with somebody's mental health, because a diagnosis of a life-limiting condition can be incredibly confronting, not just for the person that's had the diagnosis but for their family and loved ones as well. It is a holistic approach. When we work with people who are receiving palliative care, we don't just look at the person who is entering into that phase of their lives. We also look for their families and their close friends as well because it's really important for everybody.
Larry Sullivan: Tracey, you mentioned a team. Who's generally included in the palliative care team?
Tracey Silvester: It really is ... Usually a GP is really important. If somebody has a diagnosis of a life-limiting illness or a condition then they need to think about if they haven't got a good GP, they need to get one because certainly the symptom management component of palliative care is really important. Then it can be things like nurses, community nurses. A lot of people want to spend the last weeks and months of their lives at home. It's about people accessing the various community resources that are available. You're talking about nurses, various allied health professionals. For some conditions, really good physio can be of assistance to somebody who has a palliative condition, occupational therapy, counsellors, psychologists.
It really is dependent on the individual's needs, but it certainly does require then that whoever is involved with providing the care to that person, everybody is on the same page about what they want to achieve. Certainly, when we work with people in that position, we try and make them the centre of what's going on. Everybody works to make sure that what that person wants is achievable.
Larry Sullivan: How important is it to provide the care and support for families in this situation?
Tracey Silvester: Regardless of where the person has decided that they want to spend their last months and weeks and remembering that most people who have a palliative diagnosis go about their lives the way that they always have ... just because you have a diagnosis of palliative doesn't mean that you go to bed and that's where you stay for the rest of your life. People can have a palliative condition for some years before they actually enter into that end of life stage of their condition.
It does depend, but certainly for family members because, as I said, it's really confronting. If the person that's palliating feel like everybody often focuses on what they need, but the reality is for their family members, we're challenging their whole belief system. They're dealing with grief. You're dealing with loss. If the person who is palliating has decided that they want to receive end of life care at home, it's really important then to support their families because, for some families, the notion that they're going to have somebody in the house who is dying can be very, very confronting. We don't just look at the person who is receiving the care. It's their whole family as well. It is a team approach because the reality is, for most people, it is family members or informal carers who provide the great vast majority of that end of life palliative care. Just because somebody has a diagnosis that is palliative doesn't mean that they stop living their lives.
Larry Sullivan: Tracey, planning ahead is also a critically important part of this whole process. What does that need to cover?
Tracey Silvester: I think it's really important. I guess this is probably the most confronting thing for most people whether it's the person that's got that diagnosis or their family. It's about that "What do I want to have happen?" Really, really importantly we say to people "It's really about ..." It's that old line about getting your affairs in order, so making sure that you have an enduring power of attorney organised. If you are of a mind to have an advanced health directive in place so that if you are not able to make some decisions for yourself, your wishes are very clearly articulated. Having a conversation with your GP and with whoever's in as part of your health team about what you want, but I think really importantly it's actually still making sure that your family are aware of what you want as well.
There's some logistics issues. These are things down to things like having a will and making sure that your will is all organised, making sure that your finances are in order. That can be quite difficult for some people as well because they've never had to think about that. Nobody likes to think about that part of their lives ever. Certainly if somebody is younger and receives a diagnosis that means that their life can be measured in months or years rather than long years then it is really confronting. I think we all like to think that we'll live to an old age and pass away peacefully whereas the reality is, for some people, that's not the case.
Really, really important to make sure that everything is in order because the last thing you want is the stress, both for your family and for you yourself. If you're not able ... If you get to the point where you can't actually make sure your will's in order or you've got an advanced health directive, trying to do that at the eleventh hour when it's really stressful means that you're probably not going to make the choices that you need. If you do it early ... in fact we recommend everybody should have, regardless of whether they've got a palliative diagnosis or not, they need to think about what their wishes might be should they not be able to make decisions for themselves.
Larry Sullivan: Tracey, what affect has providing palliative care as a health professional had on yourself personally?
Tracey Silvester: I'm a nurse by background and have been working in and around community care for most of my professional life. I won't tell you exactly how long because that'll give away my age. My experience in providing palliative care has been in community settings. I look at it as a real privilege to work with people and their families particularly around that end of life phase. I think it is a really important part of people's lives, and I see my job as a nurse when I'm working with people who are in that phase of their lives to make sure that what they want to achieve out of their end of life stage I feel like is what is achievable, to make sure that they are as symptom-free as possible.
Sitting underneath all of that is the quality of life so that they can actually spend the last however long it is with their families or whoever they want to spend it with and do the things that they want to do. It's a tough time for everybody, and I'm not saying ... I can't say that I'm not affected by it every time that I work with a family because everybody's situation is different and people approach it very differently. I work with people who have been incredibly stoic and accepting of the fact that they are dying, and then I've worked with people who have really struggled right up until the very end and it's very different for everybody.
I guess for me personally, that means that I've got very clearly articulated ideas about what I would want to have happen when I'm in that situation because I don't want my family to have to be faced with the stress of not knowing what it is I want if I can't make those decisions. Also I want to know that I'm going to have an end of life, if you like, or a palliative phase of my life that's actually still got some quality to it.
Larry Sullivan: Tracey, there's an organisation known as Palliative Care Australia. What support do they provide?
Tracey Silvester: So, they're a great source of information, providing information to people who are requiring palliative care. They have got a responsibility around and doing a lot of great work around raising awareness around palliative care. Certainly they are running a lot of activities this week during Palliative Care Week to promote the importance of good palliative care. They also are engaged in a lot of research and developing best practice models for palliative care and putting that out into the sector to health professionals and the like. They're a great resource for health professionals as well as for consumers. I would encourage people to get onto their website and have a look because there's some really good resources there for people.
Larry Sullivan: They just google Palliative Care Australia and the website-
Tracey Silvester: That's right. That's right.
Larry Sullivan: All right. Well thanks for your time today, Tracey.
Tracey Silvester: You're very welcome.
Larry Sullivan: I've been talking to Tracey Silvester, the executive manager of Envigor, about National Palliative Care Week. If you would like more information about the topics we discussed today, that website, again, is palliativecare.org.au. There's a whole heap of information on there.