Episode 23: Palliative care
Let’s be Upfront about palliative care. To many, those two words prompt fear, and thoughts of death and dying. In reality, palliative care offers so much beyond just end of life care for those living with metastatic breast cancer; focusing on symptom management and ensuring quality of life.
In this episode, we’re joined by BCNA Community Liaison Marie Pandeloglou, who, following a breast cancer diagnosis 10 years ago, has been living with metastatic breast cancer for the past five years. Also offering their insight and expertise is Medical Oncologist and Palliative Medicine Physician Associate Professor Michael Franco.
This episode covers:
- Palliative care as a holistic approach to symptom management involving a multidisciplinary team
- When to access palliative care
- The value in building a strong relationship with your palliative care team
- Marie’s recent experience of accessing palliative care
- The cost involved in accessing palliative care
- The role of palliative care article on the My Journey online tool
- Managing symptoms and treatment side effects article on the My Journey online tool
- Sign up to the My Journey online tool
- BCNA online network
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.
Kellie Curtain [00:00:03] It's time to be Upfront about palliative care. To many, those two words prompt fear and thoughts of dying and death. But palliative care offers so much more for those with metastatic breast cancer and when utilised, can improve quality of life and help manage chronic disease. To help give a better understanding of what palliative care encompasses and when people should consider accessing it, we are joined by medical oncologist and palliative medicine physician, Associate Professor Michael Franko. Also with us today is Marie Pandeloglou, who was originally diagnosed with breast cancer 10 years ago, and then the cancer spread to other parts of her body and she has been living with metastatic breast cancer for five years now. Welcome to you both.
Marie Pandeloglou [00:00:47] Thank you.
Kellie Curtain [00:00:48] What did the words palliative care mean to you?
Marie Pandeloglou [00:00:52] I've always known palliative care to be end of life. This is a place you go to because all options are either and this is just a comfortable place to go to. So my knowledge of palliative care was really minimal.
Kellie Curtain [00:01:06] Which must be really common. Michael, is that a general assumption?
Michael Franco [00:01:14] Yeah, I think it absolutely is. The understanding of what palliative care is, is low both in general community but also in medical circles as well. And one of my big jobs and one of my big passions is just getting the message out there about what are the different components of palliative care as a specialty.
Kellie Curtain [00:01:35] Okay. So take us through it. I must say, I'm really surprised that even in the medical fraternity that it's misunderstood.
Michael Franco [00:01:43] Yeah, I think it is, less and less so now. But I think palliative care in its sort of current newer iteration is relatively young. So palliative care used to just be about end of life care, but really over the last 30 years we really started to encompass much more than that. And the definition of palliative care now is around improving quality of life in patients who've got a life limiting illness, and palliative care exists alongside active treatment options. So, previously medical model of palliative care was you would have treatment with your oncologist for a period of time, and then when that stopped, you would go into palliative care or palliative care would take over for the end bit. And certainly that's not the way we work anymore. I work alongside oncologists every day with patients who have been with me for many, many years as well, through their journey with metastatic breast cancer.
Kellie Curtain [00:02:49] So when should people start actually accessing palliative care?
Michael Franco [00:02:54] I think it's useful to think about palliative care at any point when you feel like your metastatic breast cancer is affecting your quality of life in some way. And that might be physical or emotional or it might be in some sort of social way as well, because palliative care is about quality of life in all areas. Palliative care exists in various practical forms. So we have, in Australia generally, our community palliative care teams who are able to come and visit patients at their homes and look after patients at their homes. And then we have inpatient palliative care as well, and that's typically sometimes known as hospice care. Palliative care units, in-patient palliative care units, as I like to call them, rather than hospice, may be for patients for end of life care. But often, I've got patients who come to our inpatient palliative care unit to have their symptoms controlled for a period of time and then go home.
Kellie Curtain [00:03:57] Is that your experience Marie?
Marie Pandeloglou [00:03:57] Yeah. So that's yeah, that's my experience. So I accessed palliative care more recently and it wasn't until I spoke to Vicki Durston, who explained to me what palliative care is, the first thing she said is 'have you considered palliative care?' and I said do you know something I don't know? Like I was a little bit concerned about that comment. But then when she explained it, I thought maybe this is a good idea for me. So recently one of the things I did was I had whole brain radiotherapy and that caused a lot of side effects, particularly nausea. And they tried lots of different tablets, you know, the straight, the normal tablets that you would get, but nothing helped. It wasn't until I got admitted in to palliative care that I saw a doctor, and immediately they put me on a different regime to what I was used to. And I started seeing the symptoms diminish.
Kellie Curtain [00:04:54] So did you fear that you weren't going to come out when someone said palliative care?
Marie Pandeloglou [00:04:59] Initially, I did, too, because I thought, is that why I'm going in? But then when I mentioned it to my oncologist, I said, you know, I'm considering going in to palliative care. She said, that's a great idea. And it was the best thing I did, I was in there for 10 days and walked out there with some with tablets that I'm taking even now, but no nausea, no feeling sick. And it was just the best thing I could access.
Kellie Curtain [00:05:28] So staying at home and doing it was not an option, obviously?
Marie Pandeloglou [00:05:31] No, because first of all, the tablets weren't working. And second of all, I'm by myself. You know, my husband was at work. My kids don't live with me anymore. And so it was just myself. But I spent the whole time on the couch for the whole six months, pretty much.
Kellie Curtain [00:05:50] Isn't it interesting how with a chronic disease, life still has to go on, doesn't it?
Marie Pandeloglou [00:05:55] It does. You know, I'm still a mum and I want to do the mum things and the home things. And I mean, already I've stopped working and that's been a big change for me. But I wasn't having quality of life. There was no quality of life. Friends would come over, a friend would come over because of the coronavirus and I would lie on the couch all the time and I have to apologise. But now I feel, since palliative care and since the change of medication, I feel like my life has got back to some form of normality while living with metastatic.
Kellie Curtain [00:06:33] So do you now have an ongoing connection or communication with the palliative care organisation?
Marie Pandeloglou [00:06:39] Yes. So I have part of the service is someone comes to my home once a month and that's fantastic. So we talked about how I'm feeling, we've talked about what services I need. And that's been really, really good to have somebody come out and touch base. Like, they don't leave you just because I left the hospital; it doesn't mean that palliative care stopped. And that is something I was really, really proud of and excited about. So when I was in the hospital, what I liked is you have a doctor who would come every day, just to tweak the medication if needed to be tweaked, asked if my family needed support. So, yeah, it's been the best experience I had.
Kellie Curtain [00:07:28] So to that end, Michael, is that an extension of palliative care, offering support to the family? Is that part of the whole holistic approach?
Michael Franco [00:07:37] Absolutely. And I think that's one thing that palliative care as an approach really does try to take in; that it's not just about the patient, but it's about everybody around them as well, and the impacts that a disease or an illness might have on them, but also about engaging them in how we can help with various symptoms, and what sort of support we might be able to provide. So a palliative care team might be providing psychological or psychosocial support to a patient, but equally they might be providing support to their family and sometimes more support to the family than the patient at times.
Kellie Curtain [00:08:19] Yes. So you don't have to be an inpatient, so to speak, to access palliative care, emotional support?
Michael Franco [00:08:27] Correct. So the way that I think about it is palliative care is a specialty, just like oncology. And we can work in different ways, so we've got community teams which often include doctors, nurses, social workers, psychologists, music therapists, occupational therapists, so an entire multidisciplinary team. And in the same way, then we've got inpatient palliative care, which might be, as we said, a unit where you're looked after under a palliative care service. The other important part is what we do is patients who are being looked after by another medical team, like if you're in inpatient under an oncologist, or an oncology team, palliative care can come and consult just in the same way that an oncologist might get a surgeon to come and see you. Oncologists might come and get a palliative care doctor to see you, for instance, if your pain or like in your case, the nausea wasn't being controlled.
Ad [00:09:28] BCNA's Helpline is a free confidential phone service for people diagnosed with breast cancer, their family and friends. Staffed by experienced cancer nurses, the team can help you with your questions, concerns and help you navigate through your breast cancer journey. Call 1800 500 258.
Kellie Curtain [00:09:48] So who is the onus on to suggest or include palliative care? And is it recommended that as soon as you are diagnosed with a metastatic or chronic illness, that you get on the front foot? Marie, prior to this; so you've had breast cancer for 10 years, it became metastatic five years ago. When did you actually start to interact with palliative care? Only recently?
Marie Pandeloglou [00:10:18] Only recently because of these symptoms. I didn't realise that palliative care is symptom management, so prior to that, I didn't feel there was a need to enquire about it. There's lots of information I could access, but it wasn't something that I needed to do.
Kellie Curtain [00:10:35] And that's still a bit of a thorn isn't it? In that people know palliative care, there's still the perception that it is about end of life, and yet if if people understood really what was available to them, they could be possibly making their whole experience a whole lot better.
Michael Franco [00:10:54] I agree. And I think not everybody is going to need palliative care. And palliative care is quite good at being able to scale up and scale down in terms of when you need it. And it is just recognising those arms of palliative care has a component that is around symptom control, and then it's the other component that is end of life care. But the symptom control component, we're quite good at scaling up and scaling down for instance, you might have a palliative care team that's heavily involved with you for a couple of months to sort your pain out and then are not engaged anymore. And equally, oncologists are quite experienced and good at managing these things as well and often your oncologist will call on your palliative care team if they're struggling with pain management or nausea that's being refractory to the usual management that they'd give. So I guess to answer your question around the onus, absolutely a patient should feel empowered to be able to ask about palliative care if they feel like their symptoms are not being controlled or it's maybe in some of those domains that aren't just the physical domains. Or, your oncologist may well say, I think it'd be a really good idea, I'm struggling a little with your pain control, let's get the palliative care team involved as well. I think a really good example is I've got a patient who I've known, with metastatic breast cancer for the last eight years. And over the last five years, she's had three admissions to an inpatient palliative care unit for about two weeks at a time to help manage her pain. She has had flares of pain from the disease in her bones and each time, usually about once every 12 or 18 months she's come into us. We've managed her pain, various tweaks to her medications, and she's gotten home. So I think that's a nice example of how palliative care can be involved with a patient over a long period of time, but also just in bursts if that's all that's required as well.
Marie Pandeloglou [00:12:56] Because I did ask that question, I said now that I've come, is that it? Am I able to come again if I need to? And they said, absolutely. You know, you can come as many times as you want if you feel that you need that support.
Kellie Curtain [00:13:09] How did your family react to the thought that you were going in for palliative care
Marie Pandeloglou [00:13:14] Well, the biggest mistake I made was a text the girls, and I used the word palliative. And I'm getting used to what the word palliative means, let alone someone outside. So that was the biggest mistake I made where I said, hi girls just letting you know I'm going into palliative care tomorrow.
Kellie Curtain [00:13:30] Oh gee, I bet the phone rang hot then!
Marie Pandeloglou [00:13:32] Straightaway! And that was a mistake. But the girls were really happy that I was going somewhere because whatever I was doing wasn't working. So they said, well, this is great that you're going to go somewhere where they're going to help you. And the first visit had all the girls there, had my husband there so they could actually meet the doctors and the nurses. And that was really good because they asked lots of questions as well.
Kellie Curtain [00:13:59] So apart from them managing your symptoms, did you receive any other services while you were there?
Marie Pandeloglou [00:14:05] I did. So I had pastoral care come to see me. They asked me what my religion is and they could arrange priest if I wanted to have a priest come and speak to me. Music therapy, which I first said, I don't do that. I said are we doing it as a group? They said no, individually. And then she says, please give me go. And I said, alright. And she comes in with all her instruments. And I'm like, oh, this is not gonna be good. But it was actually a really good experience.
Kellie Curtain [00:14:35] What instruments did she bring in? Take us through it a bit.
Marie Pandeloglou [00:14:39] She brought in, like a Tibetan singing bowls and just really relaxing music. I think it's called happy something, but it would just really relax me. And then I almost thought, oh, I could have done this earlier. So definitely music therapy. Psychologists, we didn't get round to doing that, but that was another option. But they still call me and they come and see me once a month. And if I need extra support, they still offer, it doesn't matter if I'm staying in the hospital.
Kellie Curtain [00:15:12] What are some of the things that you find yourself asking them when they come to see you once a month?
Marie Pandeloglou [00:15:17] About the tablets, whether I need to relook at that. So that's something that the doctor rang me and is organising a visit for me to review my tablets. Also they are asking me whether I need any emotional support, whether I need to go and see a psychologist, psychiatrist. So they're offering those services as well. And generally, just how my house is, whether I need any help around the house.
Kellie Curtain [00:15:50] So you're really building a relationship.
Marie Pandeloglou [00:15:53] I really like that idea. And the way you just said that cause it to me, my relationship is very strong with my oncologist. So we have a really good relationship. But this is just an add on. And it's part of it now. Now it's part of it, basically, palliative care is just part of my journey.
Kellie Curtain [00:16:16] That's obviously the ideal scenario. Michael, isn't it, where a relationship is formed and can go forward?
Michael Franco [00:16:25] Yes, absolutely. I think it absolutely makes things a lot easier through a journey when you do have a pre-existing relationship with a palliative care team. And then practically for me, it's something that I think allows us to provide much better care. If I know somebody and we've got a relationship with them earlier, it does allow us to help at various different points in the journey, either when a symptom gets worse and we need to be a bit more hands on to help with a symptom or maybe a patient's getting to a point where they've got questions about their entire journey and it's not uncommon for people to ask me, oh look, Michael, I don't know whether I want to continue with this treatment or people recommending this; what do you think? From a point of view of somebody who's seen this before. Even just having that perspective of somebody else that you can bounce things off, that's maybe not your treating oncologist, that you might not feel as comfortable asking; that can be something really, really useful as well.
Kellie Curtain [00:17:42] What would you recommend to take some of the fear away? Should people go and see a facility and demystify it a bit, or go and speak to staff at a palliative care unit to see what they can actually offer them? Are they all the same? Do they offer different things?
Michael Franco [00:18:02] Yeah, I think all the units do offer different things and different community services and inpatient services all work slightly differently. The ethos is still the same. I think what I would recommend is speak to people you trust about palliative care first. So in particular, I'm thinking about if you've got a treating oncologist that you've been involved with, if you've got a nurse specialist or a nurse practitioner you've been involved with your general practitioner as well as a primary care physicians. They're often looking after patients, many patients who've had or have community palliative care involvement. So speak to other people who you trust, who are part of your current health care team about palliative care. And that's often I find the best first introduction is through people you already know and trust as part of your team, because then they can tailor those sort of discussions. A patient might say to their oncologist, look, I've heard about palliative care, is that right for me? And the oncologist might say, well, no, I don't think so at the moment, but don't worry, it's on my radar. And if something comes up, you can do that or you might want to bring it up with your general practitioner. And these are the sort of things that can really value add and add to the tools that you've got at your disposal to make sure that your quality of life and the journey that we've all talked about is, you know, as positive, as high quality and goes in the direction that you want it to as possible.
Kellie Curtain [00:19:32] So what I'm hearing is that it's not a one way street. Once you get on the palliative care system, it's not fast tracking you to the end. It can ebb and flow. As you need it.
Michael Franco [00:19:45] Indeed, and there's even some suggestion in some data that having a palliative care team involved actually can not only improve someone's quality of life, but quantity of life as well. There's been some studies that have shown that if you've got a palliative care team involved and you're controlling a patient's other symptoms better, then they're actually well enough to stay well, to have other treatments for longer that they might not have otherwise had. So absolutely agree. It's not about just that end part of an illness. It's about enhancing what you're doing with your entire medical team and your entire life and family as a whole.
Kellie Curtain [00:20:20] Is there a cost involved?
Michael Franco [00:20:22] So for most palliative care services, no. Happily, community palliative care in particular, there's no cost involved and it's covered under the public health care system.
Marie Pandeloglou [00:20:33] And I went through private palliative care and that was covered through my insurance as well.
Kellie Curtain [00:20:39] Which is a big relief too, because as we know the out of pocket costs for breast cancer, no matter what stage, are quite often horrendous.
Marie Pandeloglou [00:20:49] I did ask that question, though, because that's also a deciding factor as to where you go and whether you access palliative care, was about the cost. But I was reassured.
Ad [00:21:01] Want to connect with other people who understand what you're going through, at any time of the day or night? BCNA's online network is available for people at different stages of their breast cancer journey, as well as family and friends. For more information, visit BCNA dot org dot AU forward slash online network.
Kellie Curtain [00:21:22] So what would you say, Marie, to someone who was frightened about accessing palliative care or was even just a bit curious?
Marie Pandeloglou [00:21:32] Yeah, I am curious. I'm one of those curious patients and always want to know things. I would say access your metastatic nurse or your nurse at the hospital. So, I have a metastatic nurse who comes and sees me every time I'm doing chemo. So definitely I would ask her about it and get information. I would bring it up with my oncologist. And it could be like what you said, Michael, that it's not right now, but it's something that I've got on my radar. In my case, I made all those enquiries and questions because I was having symptoms. And so I would say to somebody, definitely ask your oncologist if you feel that there's another option for you to manage symptoms or your pain and definitely speak to your metastatic nurse at the hospital.
Kellie Curtain [00:22:28] And like Michael was saying, research indicates that it improves your quality of life, which may end up extending your life. Are you feeling more positive about the whole experience?
Marie Pandeloglou [00:22:40] I do. I actually feel that I've got another place I can go to. It's almost like I feel like, okay, so if it was end of life, I almost felt there's a relationship already built, there with the palliative care that I went to and that made me feel comfortable. And early on, you asked Michael about do you suggest people go and visit? I really was impressed when I went there. I felt it would be more clinical, but it was it was actually quite friendly and warm. And I think that's probably a really good thing to do even before you make a decision to go into palliative care, to maybe go and visit and see what it's like and if it's something that works for you.
Kellie Curtain [00:23:29] I think with that in mind, Michael, there's no denying that palliative care does actually encompass end of life, too. But that must be very reassuring, as Marie just mentioned, that if you've already got a relationship, you think of the relationship with an oncologist and your medical team, which usually extends for a long period of time. And you do form an attachment to that and trust with that team. If you can start a relationship with palliative care earlier, then there must be something very reassuring about knowing that if and when it does come to that time, that they can see you through that process, too. Is it a privilege for you in what you do?
Michael Franco [00:24:19] Yeah, absolutely. It's one of the big reasons that I do palliative care as well. You do get to build some really special relationships with patients and their families and their loved ones. And when it works well, when you do have that relationship from early in a disease course to later on, it is really special. I certainly get to feel like as a doctor, I'm helping make sure that someone lives the way they want to live right through and right to the end. And with that pre-existing relationship, I get to know my patient, but I get to know their family as well. I get to know their friends and their loved ones. I know what's important to them, so if we are entering that end of life care phase, those last few months of life, I can help them navigate the system and the choices that they might want to make much better than I could if I wasn't involved. If I know my patient well, I'll know who's important to them, what's important to them. I'll know what sort of supports that they might need to stay at home for their end of life journey. Or I might know when to suggest coming into an inpatient unit. But it is, it is really a privilege. And a lot of people when you talk about, I'm a palliative care doctor, people sort of look at you really strangely. But there really is some real joy and some really, really special and positive and beautiful parts of the job. And not just for me, but for the families and loved ones of the people that I look after as well. It is really rewarding. And I think certainly both for both for ourselves as palliative care teams, but also for patients and those around them, too.
Kellie Curtain [00:26:20] I know one of our women, Marie, before she passed away, said that, talking about these sort of things doesn't make it happen any quicker, but in actual fact, can be reassuring and supportive for everyone involved. How do you feel now that you're sort of in the arms of palliative care now, if you like, and they're going to be there for, just like BCNA, for the whole entire journey?
Marie Pandeloglou [00:26:46] That's how I feel. That that I've now got a contact in palliative care. It's another resource for me as well. But whenever I want to, I can always ring them up, like that the other day I wanted to speak to the doctor, to organise to review my medication. And straightaway she knew who I was because we built that relationship, I was in there for 10 days. And I think it's really important, about me coming here today, about getting the message out there; not everyone's as inquisitive as I am. But I think it's really important that the doctors, oncologists, nurses play a really big part here. If I don't ask the question, why should I be suffering with just trying different medication from the doctor? I think palliative care is something that, I think in my case, I accessed it at the right time and it was very positively taken when I brought it up with my oncologist. But a lot of people don't know about it so I think there needs to be a lot more known out there. But also the word palliative, I think that needs to change. I really think that needs to change because a lot of people, you know, if you go out to the community and ask what they are their thoughts on palliative, they wouldn't say symptom management. And I didn't say symptom management.
Kellie Curtain [00:28:07] And a lot of people as a result might be missing out.
Marie Pandeloglou [00:28:10] Missing out, exactly. They shouldn't be missing out, if they're under an oncologist and under a nurse, really.
Kellie Curtain [00:28:18] What would you call it?
Marie Pandeloglou [00:28:19] Oh, that's a really good question. Something to do with symptom management, prevention. Symptom management, something like that. But I think it needs some work, but not just per centre. I think just the general word needs to be changed.
Kellie Curtain [00:28:35] But you feel supported and your family feel supported?
Marie Pandeloglou [00:28:38] Yeah, very much so. So, I've got a doctor there, Dr. Kathy, and she's just amazing. And so my girls have met her and she did ask the question whether the girls needed support as well. I'm glad that she did that. But as long as they saw that I was getting better, they were happy. That was the main thing. But very much, I feel very, very supported. And, you know, it was always the kind of place that that if I wanted to go out for coffee, I could go out. It wasn't just I'm locked in into the hospital. Yes. You're wearing the bands. And, you know, it's like you are in a hospital, but you're allowed to do day excursions as well with your family. I even went down the road and found a Greek Orthodox Church and went to their service. The nurse gave me a lift there. It was just wonderful. The other thing I noticed, which was great, the room was big, you know, very fortunate with the facility I was in, that they actually had a bed, a fold up bed so that if my husband wanted to stay, or my children want to stay with me, they could. And that's a great option to have. You know, maybe not while I'm going through symptom management, but definitely for palliative end of life. I think that's wonderful to be able to have your family there with you and your partner there with you if needed.
Kellie Curtain [00:29:59] Is that part of the service model and is there some flexibility in that?
Michael Franco [00:30:04] Yeah, absolutely. I think certainly all palliative care units are set up to be different to a normal hospital ward in terms of their flexibility. And all palliative care units have facility to be able to allow loved ones to stay with their family members, particularly if it is towards end of life. But just as in most palliative care units, is much more flexible rules in terms of being able to do things like day leave or overnight leave. Because we know that patients, along their journey, might have good days and bad days. And if you're feeling great one particular day and want to go home and your family's there and able to support you, you might want to go home and stay home overnight. And certainly that's something that palliative care is really good at facilitating. Inpatient palliative care units are generally more flexible and more like home or less like a hospital ward.
Kellie Curtain [00:31:00] And can you always get a bed?
Michael Franco [00:31:03] I can't say that you can 100 percent of the time, but the great majority of the time you will have access to a palliative care bed. We certainly always prioritise our patients who are in community and are in need, with symptoms. And even if you can't immediately get into the bed, your palliative care team will do whatever it takes to either support you at home until the bed's available or might get you into an associated normal medical ward to stabilise you while we get a bed in palliative care.
Kellie Curtain [00:31:34] So they really have got your back the whole time?
Michael Franco [00:31:37] Absolutely.
Marie Pandeloglou [00:31:38] I wanted to also mention that one of the other reasons that I left palliative care to go for coffee was that sooner or later I'm going to go back to my home. And I wanted to see what it was like with the medication. Walking to the local cafe, sitting down, having a coffee, because, you know, I was going to leave in a few days. So I wanted to test that out, if that makes sense.
Kellie Curtain [00:32:04] From the safety of the cocoon, you wanted to see how it transferred to real life?
Marie Pandeloglou [00:32:08] Correct. And they really encourage that. I said, right, I need to go out. I need to go for a walk. I want to see whether I can walk without being nauseous. And they really encourage that.
Kellie Curtain [00:32:20] That's great. Well, thank you both for sharing your experience and expertise today. If you'd like to know more about palliative care BCNA's online tool can tailor information specific to your diagnosis. You can download it from our website BCNA dot org dot AU. This episode of Upfront is with thanks to Cancer Australia. The opinions of our guests are always welcome, but not necessarily shared by BCNA. If you have any individual concerns, please contact your health team. And if you found this podcast useful, leave a review where ever you have downloaded Upfront; it helps others find us. I'm Kelly Curtain. Thanks for being Upfront with us.