Episode 71 - Companioning in End-of-Life Care – Social Work Education for Students and Practitioners
Ep. 71: Companioning in End-of-Life Care – Social Work Education for Students and Practitioners
Mon, Dec 11, 2023 3:45PM • 35:14
SUMMARY KEYWORDS
social workers, bereavement, loss, family, work, grief, social, life, podcast, conversation, setting, talk, person, hospitals, practice, episode, ICU, Worden’s Tasks of Mourning, sacred space, companioning, silence, death, dying, mementos, memory making
SPEAKERS
Lis Murphy, Mim Fox, Jo McIlveen, Justin Stech
J S 00:02
Welcome to Social Work Stories, a podcast exploring social work practice through stories and critical reflection. This podcast is recorded on Aboriginal country, which was never ceded. We acknowledge the traditional custodians and cultural knowledge holders of these lands, and pay our respects to Aboriginal elders past, present and emerging. We offer a warm welcome to any indigenous listeners who are part of our podcast community around the world. If you have thoughts or feedback for our team, or just want to find our whole back catalogue of episodes, check out our website Social Work stories.com. But for now, on with the Episode.
Mim Fox 00:51
Hello, everyone. Welcome to the Social Work stories podcast. Great to be back with you. I'm in Fox, and I'm here with my wonderful co-host, Lis Murphy. Hello, men. Hello, everyone. Hi, Lis. How you doing tonight?
Lis Murphy 01:04
I'm good. I'm very good, keen to talk to people about what they're about to hear.
Mim Fox 01:09
Yeah, absolutely. This is a really exciting episode, we had a fantastic conversation with a colleague of ours, Jo McIlveen, someone we both love working with. I'm a big fan of her work. Jo's a great human being and a great social worker, bereavement social worker. And Jo is someone we've worked a lot with around developing teaching and learning resources in the social work and healthcare space, particularly around end of life care.
Lis Murphy 01:36
She is my sensei, when it comes to articulating why she does what she does in the bereavement space. And what I loved about this conversation Mim was my reflecting on my own work, in, you know, working in hospitals and community and palliative care, talking about cases that I've worked on. And then having Jo talk about the frameworks, the theory, the… she was able to language it in a way that I truly valued. You know, her, her her listing the different theorists that have informed our work. And I feel like, you know, so much of what we do in this space, we've talked about this, is so hidden, yet, so many people don't know what social workers do in this space. And I think Jo's one of those social workers, that really assists our social workers to name what we do, and to talk about it in a way that it's based in evidence. It's based in good sound research and practice.
Mim Fox 02:43
Yeah, I think that's really true. We get a lot of social work students, particularly emailing us or messaging us, Lis, asking for really “What does bereavement support look like in practice? Right? And how do we weave theory and frameworks into our practice in that space?” Yeah. And it’s definitely one of the topics that's more popular with our listeners, and definitely more popular with us, because of course, you and I both come from that clinical background, right. So we love to have those conversations. But what Jo does, I think you're right, is just give that really special input around. This is the phenomenon. And this is how we understand it. And so I think this is going to be a companion piece episode, right? There's a number of episodes we've done, where social workers have told stories about practicing the end-of-life space, or bereavement space, and this is a companion episode to that that helps really guide how we think and approach our work here.
Lis Murphy 03:40
And I think the other thing that Jo does is actually give some really good tips around how to be in this space. And so I think it's a great summary piece, because some of the things that she talks about, we've heard in previous episodes, but this one episode encapsulates many of those themes that we've seen through, I reckon at least eight, maybe even 10 episodes that we've done.
Mim Fox 04:05
I would agree with you on that one. So this is a conversation we really enjoyed having. We hope you will enjoy listening to it. And we'll be back with you towards the end of the conversation.
Lis Murphy 04:16
Let's do it.
Mim Fox 04:25
I wonder Jo and Lis, whether I could ask you to introduce yourselves and let us know a little bit about your career to date. So Jo, do you want to start?
Jo McIlveen 04:34
Hello, everyone. I'm Jo McIlveen. Like Mim said, I'm a grief and bereavement social worker with Soeth East Sydney Local Health District. I've been a social worker for nearly 20 years now, which is an extraordinary amount of time for me. But I still love my work and I'm really passionate about all things end of life and bereavement over the lives.
Lis Murphy 04:56
Thanks, Jo. Hello, everyone. I'm Lis and currently, I am working as a social work educator for the Illawarra Shoalhaven Local Health District. Similarly, to Jo, I feel very passionate about loss and grief, I've worked in health as a social worker for 36 years, predominantly in health in a variety of positions, whether it be in hospital or community, and I've been an educator, and I always come back to loss and grief as being a particular area of passion. And no matter where I've worked, I've used that lens to, I guess, to work with the people and the families that I provide service to.
Mim Fox 05:38
I love that. So I want to start by asking both of you, we're going to talk about the bereavement setting as a context for social work today. And I think that can be a bit tricky for students to get their heads around thinking about working in that space in the future. I want to ask both of you, what is it that you think that social work brings to the bereavement space?
Jo McIlveen 06:02
So for me, mean, are you talking specifically about hospital environment or home environment or all of the above?
Mim Fox 06:11
Let's talk about all of the above, Jo, because you're absolutely right across as context, doesn't it?
Jo McIlveen 06:15
That's right. And I guess for me, bereavement or living with loss starts when a person is diagnosed with a terminal illness, or there's some life changes that mean that their functions declining. So at that point, families and the person are living with loss, and they're moving through that trajectory of their illness to a point at the end, which is bereavement. So, this all encompasses a positionality of say, palliative care. And I guess, at home, this means a lot of different things. As a carer of someone who's slowly deteriorating in front of your eyes, it's a really hard reality, to come to terms with seeing your partner of 60 years start to lose their physical function, or their cognitive function or combination of both, it's really hard to see them become more frail and deteriorate in front of your eyes, and you're living constantly with that loss, which in the research is coming out as something that is much more prevalent, considering how we age and die now, as opposed to how we did 30 - 40 years ago. So that's one sort of aspect to consider.
And our grief reactions along that trajectory can be very similar to our grief reactions, when someone dies. And when we experience the bereavement of that loved person in the hospital setting Social workers have a really unique and opportunistic role to do some beautiful therapeutic intervention. Now, when more and more we are being asked to do that, when I started in social work, 20 years ago, social workers weren't often involved in end-of-life care, but increasingly, that role is being built. And as people are dying in hospitals, over 50% of people die in hospitals, families and patients are wanting that psychosocial intervention in that therapeutic support.
And also, what we're seeing as palliative care, in specialised palliative care have risen as unique profession within itself. The acute hospital setting is adopting some of the holistic psychosocial care that palliative care have in place at the specialised units. And this means that social work really get to spend time with families and connect with families, and provide those points around keepsakes and continuing bonds, which is really important. We know it’s really important when people are on that bereavement journey, that they feel connected and supported around someone's death.
Lis Murphy 09:06
So just building on what you've said, Jo, I think why social workers are perfect for the death work or even the loss work is that we see it as a natural response to just being human. Beyond the hospital setting, we see that just the fact that you're born here, you're going to experience loss. So when I was working in community when I was working with say, for instance, families affected by domestic violence, I also bought that loss lens to that work as well. So it's much broader than some of the losses that we might see in the medical setting.
But back to that medical setting, just briefly, I think we are in some regards countercultural to the medical setting. We know that loss occurs and we're comfortable in that space whereas I think the some of the professions you It's hard. It's a hard space to work in for some of the professions, it's seen as a failure of perhaps medicine, that this person is, in fact, not going to survive for whatever it is that they're experiencing. And I think we have been working in this space for a lot longer than what we've been acknowledged for, I think we've been doing a lot of magic behind the curtain stuff for a long time, because I know that it's been, you know, when I think about the 80s, and working with babies who died as a result of stillbirth, we were doing that work, we just weren't actually doing it as publicly as what we can now. We had to fight really hard to be able to get those babies in the arms of their parents and be able to take photos and take keepsakes, I think we have been doing this stuff it's only now that it's valued a lot more.
And I think social work are also seen as valuable because we are doing that we don't back away from it. And what I'm really pleased about Mim is that you're bringing loss and grief back into the undergraduates studies because many of the students that we've been having for I would say, for at least one decade, haven't been doing much in the area of loss and grief. Whereas prior to that in the 90s, that was a big part of the curriculum. I ran a subject that was 16 weeks long and we actually looked at ritual, we looked at cultural impact on loss and grief. And, and I'm really pleased that you're engaging with our undergraduates, again, in this space, because if you work in health this is the area that you know, to be able to look at it through contemporary grief models is so important.
Mim Fox 11:49
Absolutely. Absolutely. I think there's definitely a space here for social work students to be trained around some of those therapeutic ways that you're talking about. And I guess when we talk about therapeutic ways, I'm wondering whether we're talking about our general social work skills, or whether we're talking about something that's much more specialised. And I know that the conversations we have with students through their training is really around the application of their general skills. I want to ask both of you, what is the role of the general social work skill base, as opposed to the more specialised therapeutic bereavement space?
Jo McIlveen 12:33
I think Mim for me, I didn't have the language around what I was doing. When I was providing, you know, a generalist social work service. I do now, which is great. And that's part of that sort of lifelong learning that social work throws at us. And so for me the term is around companioning and holding space, sitting in silence, journeying alongside someone not leading, Alan Wolfelt’s, “11 Tenets of Companioning. And I didn't know that that's what I was doing. As a generalist social worker, when I was sitting in the Rehab Ward, or when I was working in oncology, or even ED, I didn't have the language, but I feel like increasingly, we're able to resource our social workers with that language, and what that literally means and how that looks. What that physical holding space looks like, that's really great to be able to do that.
And I think like Lis is absolutely right. I think recently, someone told me it's nine out of 33 undergraduate Social Work courses have a grief and loss component in their teachings, which is fascinating. But in terms of moving towards that more specialized role. Understanding grief and bereavement research and theories, really has the opportunity to impact on our practice. And we, by knowing about the Dual Process Model by having an understanding of Neimeyer, as you know, meaning Reconstruction Theory, even applying Kubler Ross at times, or Wordens four stages of loss, having an understanding of that, in our practice means that when we're talking to a family member who's saying, “I feel so conflicted, I'm sitting here seeing mum dying in front of my eyes, and I'm so sad, but then dad's cracking all these funny jokes, and I'm laughing,” and there's this real tension around this inattention for her and what that what that looks like in theory and research is this Dual Process that we can sit in the life space and the grief space simultaneously and we can move between both the other really important bereavement research.
So that informs our practices social workers, when we become confident & familiar with it is all of the work around continuing bonds, which you know, Lis mentioned before, around the memory making and keepsakes for babies that have died. The research has caught up with what in the 80s y
ou guys knew in practice that this was helpful, and this was validating, and this was going to support parents in their grief. But now we have these beautiful theories that back up what you guys were already doing. And so applying that continuing bonds lens into the acute adult setting is just as important. And increasingly the more that we offer, and particularly given COVID, the more people will take it up,
Mim Fox 15:43
Can I ask at this point, and Lis, maybe you can speak to this a little bit, what is memory making? What does that look like? And these ideas that Jo has just mentioned around holding space and companioning? What does that look like?
Lis Murphy 15:59
So within the hospital setting, the memory making that often social workers do would be to incorporate it in their conversations with families about the person. And it might be that they want to do something with writing, or it might be that they want to actually take a memento of the person. So let's say for instance, in ICU, what is common is that we might, if it's been a sudden death, we might actually take some hair, we might do some hand prints, as this is especially with babies as well, we'll often do the hair taking, the foot, and the handprints, the photography, which has become a lot better at over the years. Because and especially for babies, because often, they haven't got many photos or memories of the baby, for all the obvious reasons.
And sometimes we will bring that also into the adult space. But also, I think what I'm finding is that and Jo, you'll probably be able to open this up a little more is that social workers are becoming a lot more creative, and incorporating what they're hearing in relation to the family and the relationship that they have with the person, in how they might actually create some memories at the time. So for instance, one of our ICU workers was telling me about letters that she was encouraging the teenage sons of a father who was still on life support but was going to be soon taken off, who died of heart attack to write some letters, things that these children wanted to say to dad but didn't have the opportunity, those kinds of things.
Jo McIlveen 17:55
I think that Lis you're only limited by your creativity when it comes to memory making exactly and then being able to language, the offer of making keepsakes with the family is really important, and not making it seem like a strange thing to do.
But also, some fabulous things I've heard about is in the oncology setting using plaster molds of hands being held. thumb prints that are then put on imprint imprinted onto jewelry. One of the coolest things I've heard is someone's heart rate in the ICU on the heart rate monitor, being printed out and then tattooed on the person's of their loved ones, or whatever it was.
But yeah, it's really only limited to the social workers creativity and the openness of the family to explore that and what's meaningful for them as a family. And that setting often as you say, there might be a lifetime's worth of mementos and photographs of Nan, but you love Nan's knobbly old fingers with her rings dangling around her old arthritic digits, you know, and that might be something that's really meaningful for you.
Lis Murphy 19:10
So you might want to take a photo of that, you know, holding her hand. Just coming back to your original question then, one of the things I that I find useful, is really being very clear about the fact that loss is a very normal part of our life cycle. So being really comfortable in that and that helps me to sit in the discomfort of bearing witness with a loved one or a family who are reacting to the impending side loss of their person or, or if someone's perhaps losing part of their body for instance. It helps me to sit and listen primarily, and not rushed to fix. It is it is challenging sometimes to sit with the high distress but we know that that's an important part of the process. And I'm, and as Jo said, we've also got the research now to back up what we instinctively know as social workers, because we've done it so many times if you're working in specially in hospitals, but to know that this is an important part of their processing.
I think there's something very comforting in some regards for the family to have someone sitting there going, “and this is okay.” And a big part of our role over the many years has been to say to other staff members, “this is natural,” what they're doing is absolutely natural, even though they look like they're bouncing off the walls. And, and I think that has really assisted staff as well, to know that there is no set way of reacting to a profound loss, we need to broaden it out. And I think social work plays a huge role in helping other health staff to get that,
Jo McIlveen 20:55
I think, Lis, also on that, as social work students and social workers, when we're starting our career, if you're working in a hospital environment, or in a healthcare setting, you really need to unpack that for yourself personally in order, yeah, in order to be able to, you know, bring your A game in those situations, if you're dreadfully uncomfortable, if you've had so many experiences that in your own personal life, that impact on you, you know, you really need to work through those in order to protect yourself in that situation, when you're providing that end of life care. And also be able to provide that Social Work Service and intervention that's needed from the family, I think that's really key.
And, you know, even my, I can see my own journey and understanding with that has changed as I've matured, and have become much more confident in navigating those existential questions around life and death and what that means to us.
Lis Murphy 22:05
And can I say, Jo, I think there's a couple of ways in which we need to do that in an ongoing way. You know, I think, to process their own losses is very important. And I would say, all good social workers have done their own stuff, whether it be through counseling, or therapy, or whatever kind of therapeutic process, I think that's really valuable. But I also think that there's room in the supervision space for this, I think that is absolutely essential that we bring into this, what can sometimes be raised for us, because you know, that, you know, you can be working in this loss and grief space, but sometimes there can be there can be an event, or there can be a family that really hit you in a particular way. Take it to supervision; what is it about this particular loss, or this particular family or this particular person, that's resonated in a deep way for you, because it might be that your loss, your own loss is being ignited again, or it's reminding you of something. And so and I see that supervision legitimately, is where you'd be talking about that, and then connecting
Jo McIlveen 23:10
It’s your values as well. There's, you know, if you sit in a position where you have been brought up and you value life, over everything else, and time with someone, it's going to be really hard for you to be working in an environment where death might be seen as not the worst option, but for you as an individual and as a person functioning in your family unit and in your greater community. It's going to be, you know, cause some real tension, I think.
Mim Fox 23:40
Can I ask you both, with all of these ideas, how has that changed our practice since COVID? Started in the last few years, there's been such upheaval in health care. And so many changes have come about what has what has all of this meant, what is the pandemic meant for how we provide bereavement support? Now, what have you seen that's changed, if anything?
Lis Murphy 24:07
Well, what I've seen is a broadening of practice. So I see that social workers are using it a lot more IT and a lot more comfortably. So, for instance, family conferences now that used to spend bloody forever trying to get entire family members into a physical space together. COVID has shown us that you can actually use it in a really good way to keep families informed, and they don't have to try and get to the hospital at the same time as the doctors able to do to do a family update.
For instance. I've seen the challenges of social workers trying to connect family at end stage of life in the middle of a pandemic and that has been incredible. It was challenging, but it's been the social workers that have really fought hard for some of their families to actually be able to spend time with them.
And look, I've seen practitioners who have, you know, done some marvelous things with their eyebrows as well, because of course they're working from behind masks are doing a lot of work in that space of linking the patient with family who are not able to get into the physical space.
One of the beautiful work that I saw in ICU was how the social worker, humanised the COVID patient by actually finding out from the family, all these really useful parts of them, that made them the person that they are, and use that to talk to staff about who this person was; to use things like playing favorite music in the room as they were lying there, to be talking about the family dog with the person. And I think that also helps staff too, because normally, the staff would have the family member right beside the bed and able to actually talk about this stuff. I saw that the social worker was often the conduit in that space. Jo, what about you,
Jo McIlveen 26:16
So many things, but I guess things that have stood out for me have been that widening of practice. Phenomenal, right? Just so impressive, unbelievable, and the way that social workers have pivoted, I hate that word, but like almost overnight, right, like fascinating. And then really just applying the same baseline skills and understanding that flipping it on its head, to make sure we can support the family. By reassuring them, we're providing a soothing and comforting environment for that person that they can't be with as possible things like psychosocial spiritual assessment, exactly that leads getting to the, to the nuts and bolts of that person and what's meaningful for them, and what the family think would help in that situation, given they can't be there.
Interestingly, I want I have a question around the fatigue that social workers are carrying, because there's something about being with someone physically, and that that physical connection with someone and holding space within a room not on a device. And also some of the social workers I've spoken to have said that, you know, in the rare, in some families and minority, they have found the losing of a loved one via a device, so unrealistic and so disconnected, that it actually impacts further on the reality of the loss, as opposed to being able to bear witness via device. And I reckon there's probably cultural implications there, something to do with, you know, comfort in using tech as a medium anyway. So that's really interesting.
But I do think that fatigue piece is really interesting kind of perspective for social workers, because it takes more brain space, doesn't it? Like we have to, we have to adapt and grow and learn. And that can be really exhausting, let alone the fact that that's been an experience where we've shared the trauma of, of what's happening with COVID, in general, that this was impacting on us as much as it's potentially impacting on, on the on the people that we serve. So that's, that's another challenge for me, you know, COVID what we know about bereavement, that when one person dies, about four people are affected, or have bereavement experience loss and grief following that death, what some recent studies in the states are showing is that because of no visiting, you know, social distancing all of these implications that we've put in place to try and manage people's safety, that it could be now as one death, and nine people are adversely affected, which is really significant. And given that there's, you know, been around 5000 COVID deaths in Australia, if four people are affected just after that death, that's around 40-45,000 people experiencing what we would call a complicated or prolonged grief experience.
Lis Murphy 29:26
So it might take a while Jo before that starts to kind of the rippling impact starts playing out as well in relation to the complications that have occurred as a result of losing someone in COVID pandemic.
Jo McIlveen 29:39
Yeah, absolutely. All that stuff that we can, that we would take for granted previously. You know, being able to kiss your mum, without PPE, whatever it might be, you know, all of those sorts of things. Really. There will be a lag but there's some amazing research coming out. Looking specific perfectly at how bereaved people are bereaved in this in this sort of two year period, which is going to continue on, isn't it?
Mim Fox 30:08
That's right. So and the lessons that we've learned, I think up until this point, we're just going to build on those lessons now and increase our knowledge and allow social work skills to be adapting as we go forward.
Lis Murphy 30:29
If I had to choose my most favorite section of that conversation with Jo, it was when she described the Dual Process to remember she said, “It's sitting in the life space, and grief space simultaneously.”
Mim Fox 30:47
I loved it, and the phrasing of that is just beautiful, isn't it? And it's so descriptive. It's exactly what we do all the time in that end stage. Right. Just perfect. And
Lis Murphy 30:58
I think I'll just leave it at that, she explained it so beautifully.
Mim Fox 31:02
Absolutely. I mean, and for any of our listeners still left wondering What does companioning mean? What does holding space mean? I mean, really, this is the episode, isn't it? You know, just anytime you're out there in everyday conversation with people just say, come on. I'm gonna hold space now. And now you know exactly what that means. I loved it. I love this conversation. Lis. I'm glad we had it. I'm glad we were able to get it out there for everyone. We would love to hear what you will think about it. So get in touch with us. There was a special guest in this episode lead.
Lis Murphy 31:34
I was going to say the other being that enjoyed the conversation was my fur-grandchild Lockey, my daughter's boxer. And you know, I was so involved in that conversation. I didn't hear it at the time, it was only when we've relistened to it. I've heard him, you know, really agreeing. I think he got quite passionate about it too!
Mim Fox 32:00
Lockey’s a fan of Jo McIlveen, what can we say! Yeah, and if you want to send complaints in about the fact that we had a special guest in this episode by way of Lockey, No, we'll take complaints about the title “fur-grandchild or fur-baby,” but we won't take complaints about Lockey's passion.
Lis Murphy 32:18
Maybe I can talk to him a little bit about the importance of silence.
Mim Fox 32:23
Look, I think there's some real development there for Lockey underway, which this episode could really help him with, right?
Lis Murphy 32:29
If he's going to be a companion dog one day, and that’s also part of the dream., if we could have companion animals in hospitals, now there's a conversation I'd love to have. But he's got some development.
Mim Fox 32:43
Look, everyone's got work to do Lis, What are we going to do? So we criticise Lockey for that? Lifelong learning.
Alright, everyone. Hope you enjoyed that conversation. We completely loved it. We'll talk to you next time. Bye, everyone. Bye, everyone.
Lis Murphy 33:02
Hello, there, Lis Murphy here. Listen, have you ever wondered what it would be like to share a story of your practice? On the Social Work Stories Podcast, let me tell you, it is so easy to do. If you're interested. All you have to do is email us Social Work stories, podcast@gmail.com. That's “socialworkstoriespodcast” (all one word) @gmail.com Then one of us will contact you back. We'll help you shape that story and record it. And that's it, simple. So listen, why don't you email us today. And we'll get back to you very soon, and help you shape that fabulous story.
J S 33:49
Thanks for listening to the Social Work stories podcast. All of the stories we share are de identified to respect and protect the people involved. We create this podcast because we're passionate about building the Global Social Work community and strengthening our practice no matter the context. If you want to help us grow the podcast tribe, and continue the work we do, we would love it if you can subscribe or follow the podcast in your favorite podcast app. That way, you'll be sure to get every episode as soon as it's released. While you're in your podcast app. If you can leave us a five star rating and write a review it would mean so much to us. You can connect with us on Instagram, Twitter, Facebook, and LinkedIn where you can share our posts with your friends to help spread the word. And you can always find us at our home on the web, social work stories.com The Social Work stories podcast is made by Lis Murphy. Dr. MiM Fox, Justin Stech, Dr. Ben Joseph and Maddy Stratton.
Thanks so much for listening.