The Silent Why: finding hope in grief and loss

Loss 34/101: Loss of health and life in paediatric patients: Hui-wen Sato

October 04, 2022 Chris Sandys, Claire Sandys, Hui-wen Sato Episode 52
The Silent Why: finding hope in grief and loss
Loss 34/101: Loss of health and life in paediatric patients: Hui-wen Sato
Show Notes Transcript

#052. Imagine working with sick and dying children, where feelings of loss are all too familiar. How would you prepare for going to work everyday?

In this episode we chat to Hui-wen Sato, a Paediatric Intensive Care Unit nurse at Children’s Hospital Los Angeles.

This is The Silent Why, a podcast on a mission to open up conversations around loss and grief and to see if hope can be found in 101 different types of loss.

Loss #34 of 101 - Loss of health and life in paediatric patients

Hui-wen lives in Los Angeles with her husband, two young daughters and two tortoises. She has worked as a Paediatric Nurse since 2010, after changing careers from working with the elderly. Since starting this work she has truly seen the best and the worst of humanity, and through this journey she has developed a passion to talk about the ‘inner heart experiences of nurses’.

We wanted to chat to her to find out what it’s like to work in a job that involves facing constant loss of health and life in children and their families. What drives her to do it? What can you find to enjoy in work like this? How does she protect herself from compassion fatigue? And what has she learnt about grief through her role?

Hui-wen has a beautiful way of expressing how grief has taught and shaped her, and her view of life, faith and family. She shares wisdom to help us all when facing loss and grief, but especially those who face it in their workplaces on a daily/weekly basis.

She also shares a fantastic text response her friend sent, that we should all remember when dealing with friends and family who are grieving.

You can read more from Hui-wen on her personal blog: http://heartofnursing.blog and AJN's blog Off the Charts: https://ajnoffthecharts.com.

Hear her Tedx Talk; ‘How grief helped me become a better caregiver’: https://www.ted.com/talks/hui_wen_sato_how_grief_helped_me_become_a_better_caregiver?language=en

Follow her work on Facebook: https://www.facebook.com/Huiwen.Alina.Sato 

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Episode transcripts: thesilentwhy.buzzsprout.com

Thank you for listening.

Hui-wen:

Hi, my name is Hui-wen Sato and I'm here to talk about the loss of health and life in my paediatric patients as a nurse.

Claire:

That's Hui-wen, we're Chris and Claire, and this is The Silent Why podcast. Welcome!

Chris:

We're a childless, married couple on a mission to see if hope can be found in every type of permanent loss. We've set a target of 101 losses, and this is number 34.

Claire:

In this episode, we'll introduce you to Hui-wen Sato from California, who works as a paediatric intensive care nurse at the Children's Hospital in Los Angeles.

Hui-wen:

There are these situations where you're seeing the worst tragedies and all you want to do is go and help. And you realise that this is not a normal thing for most people. And that, that in and of itself, seems to mean something. It doesn't push me away.

Chris:

Hui-wen has experienced loss many times through her work and has a really interesting take on grief as part of a career. Much like murder detective Steve Keogh, in Episode 33.

Claire:

I first encountered her through a TEDx talk that she gave titled 'How grief helped me become a better caregiver'. As you can imagine, once I heard that, I just had to reach out to see if she'd chat to us.

Chris:

And being the lovely caregiver she is, she said, yes.

Claire:

Hooray!

Hui-wen:

It's not because I'm drawn to these really dark themes. I'm so fascinated by sort of the human experience and the depth of what people can go through, and yet how they work through it and sort of come out of it.

Claire:

In many of our conversations, we talk about permanent loss on a sudden and shocking scale. But what's it like working in a job where you know loss is coming, where you expect it, where you're paid to expertly prepare for it, and comfort others through it, and all that with children.

Hui-wen:

If I come in, and I meet a family where, you know, they're in the most human, vulnerable point of their lives. I don't come in as a robot I come in as somebody who has to really feel out on a deeply human level.

Chris:

So lean into everything Hui-wen has to say, she speaks so beautifully about the light that can be found in the darkest of places.

Claire:

And we started off our chat by asking her to introduce herself and what a normal week looks like for her.

Hui-wen:

My name is Hui-wen Sato. I am a paediatric ICU nurse. I work in Los Angeles, California. And a typical week for me I work part-time, which means I just work two 12-hour shifts a week. I happen to work every Monday and Saturday. So I also have two young elementary age girls, so the other days of the week, I am home managing the kids in the household. But with work, we are in a paediatric ICU. And that means that we get patients anywhere from two weeks old to sometimes 18 years, even upwards to 21, 22 years if they've been followed in our hospital for a long time. They can be patients who just need one-on-one or we can have a maximum of two patients at any given time. And they're patients who just need much more intense focused nursing care and attention. And so it's a very, very broad range of patients. It can be anything from post-operative liver transplant, kidney transplants, to patients with cancer who have developed really bad infections, they can be victims of traumas, so really bad car accidents, you know, we're paediatrics and so we had stories of kids who got adventurous and climbed out a second-story window and didn't realise that that wasn't a good idea. We can have patients who are attempted suicides, victims of abuse from others, gunshot wounds, drowners, it can be quite the array of patients. And so anytime we go into work, it's always different.

Chris:

Have you always worked in paediatrics? Is that quite a new thing? Or have you been in other areas of care as well?

Hui-wen:

I am actually a second-career nurse. And so when I became a nurse, I did immediately start in paediatrics, which was a surprise to me, I thought I was going to be working with adults, I'm kind of an old soul. And so I didn't think I was quite playful enough for kids, but I think the ICU ended up being a really good fit for me because it is a lot more focused indepth, sadly, some times, or a lot of times, much more serious. And we spend so much of our time actually caring for the parents as well, which can be both really rewarding and really challenging. But prior to becoming a nurse, I actually worked in long term care facilities with the frail elderly. We did a lot of kind of nursing assistant type research interventions, and then when I became a nurse, I ended up in paediatrics. I've been in paediatrics since the beginning of nursing, and I've been there for almost 12 years.

Claire:

I have so many questions. My brain's just like'how far did people come to this hospital?' 'Could you have a two week old and an 18 year old?''How do you know which one you're gonna get each day?' Like, the variety of what you must encounter, give us an idea of how long you might be with, if you've got two patients, is it that likely that you're coming in for a few weeks having those same patients? Or could it literally be every week is a, is a change in patient?

Hui-wen:

It can be literally a change of patient, it could be daily, so the way with the way nursing works is if you work consecutive shifts, they try to give a little bit of consistency to everyone. So if I worked a Monday, Tuesday, Wednesday, I would likely be assigned to the same patients, one or two patients, those few days. But then if I came back to work the following Saturday, I would get a totally different patient assignment. There are times when we do actually sign ourselves up to the primary nurse for a patient that we recognise is going to be in our unit for a very long time. Maybe they have very specific nuances to their care, or the family dynamics, where they would just really benefit from nurses who, every time the nurses come to work, they're always with the same patient. And it gives everyone a lot of extra consistency, familiarity, extra trust, and the nurses can advocate better for their patients that way, when they just really know the ins and outs of what they need.

Chris:

Don't want to assume anything, but I'm imagining because it's intensive care that most of the time the patients, the children, that you're with, are not in maybe a conscious state or they're, you know, it's quite severe and quite serious care, as opposed to just life on a normal ward. Would that be right?

Hui-wen:

Yeah, I would say more than half of the patients probably would be either sedated because of the different medical interventions they have, where we need them to not be fighting, having a breathing tube, you know, in their mouth, or just other therapies where we just really need their bodies to rest and not use energy to fight everything. And there are some patients who are alert and awake, we kind of make a joke, you know, if we see them playing on their little iPhone or iPad, then they're stable enough to go to the floor. If they're talking and giving us sass then they're ready to go out of ICU.

Claire:

It's just like when you stay home from school when you're sick, and then you get a little bit excited and run around and your mom's like,'Right, you're going back!'

Hui-wen:

Yes, exactly. Yes. But yeah, there are some who, sadly, it's not even because of them being on sedation medications that they might just be so so very sick, that they've really kind of lost consciousness or responsiveness. And it can be quite the variety of levels of engagement I would say with our patients.

Claire:

Over the years, I've grasped an appreciation for why people would do this kind of work because my mum was a paediatric nurse. But I'd imagine a lot of people would look at this and just think,' Oh, sick people's hard enough really sick people is even harder, and then you you put children in the mix, and that's just... I don't I don't know how you how you do that'. So what are the reasons that you enjoy doing this? And what kind of brought you into that kind of work?

Hui-wen:

I remember reading this poem once it was a nurse who wrote about the experience of a nursing student who saw an emergency happen in the hospital. And, and it's this very dramatic scene where the patient is really kind of decompensating. And you're reading this story, you're thinking, 'Oh, my gosh, this just sounds so terrible and overwhelming'. And that closing line of the poem says, 'Let this be my life's work, let this be my life's work'. And it's this really striking, strange pull, I think, of it's not just adrenaline seeking, you know, but I think seeing that there are these situations where you just, you're seeing the the worst tragedies and the worst illnesses, and the worst circumstances hit people, and all you want to do is go and help. And you realise that this is not a normal thing for most people. And that that in and of itself, seems to mean something, it doesn't push me away. And I want to go and do something, and I have this something in me that can go to it and wants to learn what I can do. And I think we also recognise that because these patients and their families are where they are, they shouldn't have to go through all of that alone and that if there are people who can be there can be present without panicking, feeling utterly overwhelmed by it, that we've got to go to them, we've got to do what we can for them.

Claire:

I understand that. Not with physically sick people, I'm not great with that. But with people who are going to mental anguish and grief and those sorts of things, I totally see the pull of, if you can do something, then there's that kind of, I want to, I want to learn, I want to help. And I think you're right. I've learned myself, that's not a normal reaction for a lot of people. Before you were a nurse, had you experienced much sort of loss and grief at all, or was that your sort of first encounter with that kind of area of life?

Hui-wen:

I think I've, I've always been kind of an old soul. I've always been this very deep thinker about life and the experiences we have the good and bad, and how people, how people get through some of the wild things that they get through. I remember when I was in college, and a guy I was dating at the time, he was noticing all the books I was reading, they were all memoirs and things that people writing about, whether it whatever it was, you know, journeys with addiction, or, you know, attempted suicide or deaths in the family. And he kind of talked about all their journeys. And he just asked me,'Why are you always interested in these really sad stories?' And I said, 'No, it's not because I'm drawn to these really dark things'. I'm so fascinated by sort of the human experience and the depth of what people can go through, and yet how they work through it and find their way and sort of come out of it. And so I was always kind of drawn to those kinds of experiences. You know, I've certainly had my share of personal struggles as everyone does. But I think there was certainly a point in time where someone very close to me had a mental health crisis that eventually became a medical crisis. And I remember going through this person's process of recovery and healing with them, and thinking what what I would do if this person hadn't made it or if this kind of situation repeats itself again, because there was no guarantee to me that this person wouldn't have future crises that they would be lucky enough to survive, like, like they did this time. And it pushed me to a point where I had to ask myself, why do I still believe that there is reason for my faith in God, reason for hope, and belief in goodness in this world, even if this kind of crisis happens again, and it doesn't turn out as favourably as it did this time. And I had to wrestle with that very, very deeply, because I knew there wasn't a guarantee that things were all going to turn out perfectly. And I found myself in the midst of my own story of, okay, well, I've read all these other memoirs of people who have been through these really, really big, momentous crises in their lives, and they've had to find their way through. And now I find myself in the midst of my own, and there's something deeper that I, I have to find, because life is gonna go on, and I have to figure out how to live it and how to have hope, regardless of what happens with this person. And I think then seeing that for my patients and their families of realising that they don't always have a guarantee that things are always going to turn out the way that they want. But still, how do we wrestle hard with that question of what does hope look like? What does the ability to go forward with your life look like? When you don't have guarantees of how the future is gonna go?

Chris:

One of the clear things that comes to my mind really, and deeper down listening to you talk is this sort of willingness to prepare for, to ready yourself for, what might happen, you know, for the reality that we will all face loss in some form or another. And quite often, most often with certainly the podcast, we're talking to people who have reacted to a very sudden or unexpected loss, but you're clearly someone who is willing to consider what could happen and therefore prepare for it. Do you feel that that's right for yourself? And is that something that doing the job that you do is quite helpful because you are readying yourself to face loss regularly

Hui-wen:

You know, there's this really curious phrase that maybe? always gets me when I go to work and I get report on some of my patients. So I'll come to work and that the night shift nurse before me will start sort of the summary of the patient's history. And a lot of times you get this phrase that starts with'previously healthy', previously healthy three year old, previously healthy five year old, previously healthy 13 year old... was going about their business doing this or that and then they were hit by a car they were previously healthy, but then they started having a couple of weeks of dizziness and, and then they were vomiting and they came in for their symptoms and found that they had, you know, a brain tumour. And there's this very jarring sense of, you know, for me, as a mother of young children of this could actually very well be my kids stories. And it's not to be doomsday about it, but it is to recognise that these were parents who were living their normal lives, just like I live my normal life with my kids. You know, you just go about your business, they started school, I hope they do well, I hope you make friends, and then you were previously healthy. And suddenly, there's this interruption that no one sees coming. And I think that I've learned over the years in doing this work, that really, these things can come at any time. And they can come upon all kinds of people, you know, the good and evil of the world. And the variety of experiences can just can befall anyone and everyone. And I recognise that I'm not immune to that. And so I think it's taught me something about'today, I have time with my healthy children, and I, I better make the most out of that' not I don't always sometimes they drive me insane, and I want them to be in the other room! [laughs] That's a reality, too. But it teaches me a certain appreciation for the fact that I have them on this mundane day, healthy and with me. And, you know, when the pandemic came around, I think there was certainly a stunning vulnerability that we all realised we had, right? To unexpected things and the ways our world can sort of be up ended by illness, and what a little tiny virus can do.

Claire:

How often would you come across death when you're working with children that are that ill? Is that Is it more common than people would expect? Or is it quite rare?

Hui-wen:

I would say it's actually more common that people might expect. I mean, even amongst our colleagues, you know, I remember one of my managers who was primarily responsible for training our youngest nurses, you know, she would try to warn them now we see a lot of death and dying in our unit. And people say, 'yeah, I know, it's an ICU'. And then they would, you know, be a couple years in and say, 'Oh, you tried to warn me, but I just didn't even realise how much how much we actually see.'

Claire:

And obviously, because it's children, you're not dealing with just the death of the child, you've also got to deal with grieving parents and people walking through that. I'm guessing you get that in adults as well. But it feels like there's sort of a more of an intensity to it when you're talking about children and parents are how do you work through that? How do you deal with having to tell parents, or there's really big moments, which nobody really wants to be involved in, how do you feel about that? Is that also something that you're drawn to because you feel like you can help?

Hui-wen:

Those spaces with the parents really never get easier? I would say, like when I was with the frail elderly before I became a paediatric nurse, you never want to see anyone lost. With paediatrics, there's the sense that they just got started, a little one who's only been in the world for four weeks. And suddenly, they're teetering on the edge of life and death, or, you know, we would get patients who maybe just graduated from high school, and they were looking forward to college and making all the plans of just launching into adulthood. And you know, tragedy struck and all the other, you know, you see the graduation pictures kind of put up all over the room, and you're sort of struck by, death doesn't seem like it should be a part of this phase of their life. And who feels that more than the parents right? Where the parents are, had just built the nursery or who had just started making all the plans to send their kids off to college. So when we meet the parents in the space, there's always a lot of shock and disbelief that they're sitting in. I think that we've learned to just sit in that space with them. And a lot of times, I think these parents carry a lot of guilt, because they're their children, and the parents feel like I should have protected my child better, or I should have seen you know, the signs of illness come on, or we shouldn't have gone on that vacation where they got this random infection. There's a lot of guilt and blame that they feel if I was responsible for protecting and taking care of my child and this thing has happened. We sit in that space of shock with them. But I think we also spend a good amount of time trying to reassure them that you know, you can spend a wonderful parent to your child. And even as we help them through sort of the end of life care, we try to do things that honour their parenthood to their child. So would you like to be a part of bathing your child? You know you want to put them in their clothes, or do things that help you feel as a parent that you're still doing things to take care of your child, even at the end, and show us as even the medical team, this is who my child is, you know, whether it's their outfit or the toy that you put them with that it's not just a physical thing, but this is the life of my child that I want to want to honour at the end,

Chris:

For you to be around that to work around that, you know, regularly must be an incredible something on you, I'm not sure what that something is, if you were to fill in the missing blank, what what is it like for you working in that environment? And having the heart for, and giving the time to, but you know, it is your job, and then coming away from work with, with whatever those feelings are, what's it like?

Hui-wen:

I often think of it as sort of slipping between two strange realities. You know, there's sort of the world's normal, you know, I dropped my kids off at school this morning. And, you know, had to scold them for taking so long and gathering their things and I had to make sure that they had their sunscreen and their water and all the little everyday annoyances of just trying to shepherd them along, you know, and then I flipped to work where having worked there for 12 years, I've gotten fairly accustomed to the kinds of stories and patients we see there. But I might, you know, I might have a particular patient, like a patient who drowned or a patient who was in a car accident, you know, someone who resonates a lot with my own child, and I'm 12 hours in deep, we're the nurses, so we're the closest at the bedside, we're engaging the family, the entire 12 hours, really sitting in that space, moment by moment of all the parent's emotions, and then obviously just doing the patient care. And for me, the processing and the emotions of being with that patient and their family, it always comes up the next day. But that becomes really tricky because I work Saturdays and Mondays. And so the next day after work is me flipping back to my normal life. So my mind and heart are still kind of working out all the emotions and thoughts of my patient from the day before. But then I also have my own children in front of me, and I'm trying to take care of them. But then I'm still feeling very heavy about the day before. And I think there's a certain disconnect that's always going to be there where my, my kids certainly don't understand, you know what I'm seeing at work, or if I'm at church and I'm standing in the courtyard, and I'm just watching all the normal kids run around doing normal things. And I'm getting emotional and teary eyed and I'm processing my patient from the day before, and I'm very aware that no one else in the courtyard is having this strange kind of out of body experience of oh my gosh, look how marvellous of a thing it is that healthy children run around in a church courtyard. You know, no one else is standing there marvelling at this. But I'm thinking about my patient and how vulnerable our life is and how quickly loss can come and how sweet these moments are with our kids running around, and then someone will come up to me and say, 'how was your weekend?' And I just, it's very hard to sort of flip back and forth and allow through the tension of the contrast between the two worlds.

Claire:

It sounds like that processing time is really important for you to be able to, to kind of think through what you've what you've been through before you go back into it again. So if somebody works in this full time and they are running from it day to day to day, are there different coping strategies for if you don't get that time out?

Hui-wen:

There are for sure, a very, very broad array of coping strategies, and they go from extremely unhealthy, to okay, to relatively healthier. So certainly on the much less healthy side, you get heavy dependence on alcohol or, yeah, mental health issues, to just sheer burnout from the intensity of stories without having space to process them or really work through how they affect us. There's certainly a lot of forms of depression or anxiety that can kick in, you know, there's certainly people who have found their ways of I have to be out in nature, I have to just go on long runs and go on vacations have space from it all think we're trying to slowly destigmatise the need for therapy, or the value of therapy, I should say. I think the recognition that these things take a toll on us too, you know, I think as professional caregivers, there can be a bit of a sense of,'Well, it's the families grief, we're doing our job', or we feel like other people look at us and say, 'Well, this is just your job, right? This is what you sign up for. And the grief belongs to the patient's families'. Which it primarily does for sure, but for us when we do a job that is this intensely personal. If I come in and I meet a family where, you know, they're in the most human a vulnerable point of their lives. I don't come in as a robot I come in as somebody who has to really feel out on a deeply human level, what they're feeling what they need, how do I meet them here and engage them. And so, to think of coping as only disconnect, 'I gotta find ways to just disconnect from it', I think shuts out this whole reality of the human experience we have when we engage our patients and family members, and that we also are going to feel their pain and feel the loss of them as people on the periphery for sure, we're not the patient's parents, but we're still pretty in deep as their caregivers. And so I personally am a very big believer that when we talk about coping, we have to recognise that very, very human aspect of those, and we have to tend to it and acknowledge it, rather than'No, it's just my job, I just clock out and try to leave work at work'. I don't think it's that simple.

Chris:

With that in mind, and also to summarise, I think what you're saying we hear quite regularly, or you might read when you're in the area of loss and grieving about 'feeling your feelings', allow yourself to really feel your feelings. So how does it compare being at work to being at home? So when you're with your team and your colleagues? Do you collectively acknowledge those feelings? Or is that something you do privately, when you've left the workplace?

Hui-wen:

I feel lucky enough to say, I think it's 'both and' at least in my work environment, I feel that we have a very, very supportive environment with regards to acknowledging the the emotions and grief of the staff. And so there are a lot of things that they tried to build into the hospital to give us space to process that. So it could be some debriefing sessions for staff to just come together, a lot of times those can be facilitated by a chaplain at work or a social worker. And they will meet us with cake and tea and say you can come in and if you want to talk, you can talk and if you don't want to talk, but you just want to hug you can also come in for that our managers in our unit are really, really wonderful about trying to create spaces for that when they know we've had either one or two really big losses, or just a series of heavy cases over time. It's still a very fast paced environment. And so the reality is that even you know, those moments can be very helpful in acknowledging what we're going through at work, but we still have patients we have to take care of. And so a lot of times it's a quick pop in pop out 5, 10, 20 minutes maybe. And from there, I think evoke of the copings in a working through our feelings really has to happen, more on our own at home.

Chris:

What's your learning journey been like over that 12 years in paediatrics of processing what you see in the field and experience the emotions at work? What's that journey been like, into where you are now?

Hui-wen:

I think in the beginning, I would look around at all the very experienced nurses and I would just think everyone just seems so okay, when they're here at work. Everyone just seems 'I'm good, I'm good, no, it's kind of intense in there, but I'm good. I'm good'. It's changing a bit, but I think the culture generally has been this sense of stoicism is to be commended. You know, and you certainly you have to be able to keep your emotions and yourself in check when you have a patient to take care of and you have to put their needs in the family needs foremost, you can't crumble to the floor trying to support them. But I think in the beginning for me, I certainly went too far in; 'I think I'm supposed to just always be okay with everything that and see at work, just somehow not be moved by it'. And when I started to realise that that was not the case. Then it's actually what prompted me to start really asking a lot of questions about 'why are we so bad at acknowledging our grief as healthcare professionals?''Where do we get space to acknowledge this too?' For me personally, I started to realise that my emotions would always come out the day after work and so I would actually feel fine sort of at work I would feel very numb and sober but not tearful, but it would always be the next day and I could be at Target shopping I could be at the park with my kids I could be just cleaning the house and then suddenly I would find myself you know, on the floor crying and as I started recognise my own rhythms of, oh, this is this is me processing what I'm seeing at work. And I've just stopped fighting that so much. And I've learned to give myself a little more space the day after really difficult shifts to just know okay, it's probably going to come out too. Today, so I should probably be in a little bit of a quiet private area. Avoid coffee shops, if I can create some really awkward moments.

Claire:

When you see the woman crying in the supermarket, it might be a paediatric nurse on her day off, just processing.

Hui-wen:

Just give her space, it's just her rhythm, it's ok.

Claire:

So how like, because Chris and I have both worked in hospitals, and I know one thing we would say is that, you know, a lot of doctors and nurses, maybe more the nurses, I don't know, have a quite a cheeky sense of humour. And behind the scenes, you've got a bit of a prank culture going on sometimes and stuff, is that the case when you're working in intensive care?

Hui-wen:

It is! I'm kind of known to be a bit of a prankster at my workplace. And, you know, obviously, you have to find the right context, you're not going to do it in front of the room where there's a terrible tragedy, you know, happening, but it does provide actually a lot of very, very needed...

Claire :

Relief?

Hui-wen:

Yeah, just relief, yeah, yeah. And so, oh, I have so many stories of you know, I've spiked to coworkers, coffee with just obscene amounts of salt. And... [laughs]

Chris:

I'm glad you said 'salt'! I thought something worse was

Hui-wen:

Oh I mean, it was so great, I had to position myself going to come out. to make sure I was in front of him when he drank it, because I just, I had to see how that was gonna go down. Our managers and I have set up a fake sort of disaster survey for a colleague before, which is very stressful if you're the charge nurse, you're already trying to run the unit, and then you think surveyors are gonna come through. We set up a whole fake survey to add to his stress for the day. I know of some physician colleagues who felt, this is really bad, but they'll set the sound of the Code Blue alarm on their phones. And then they'll go to their colleague who's trying to get a nap in from being on overnight. And then they'll set off the sound and just watch their colleagues fall out of bed, thinking that there's a real emergency. I mean, we're really bad. But it's really great! [laughs]

Claire:

You've got to have these ways, like you said of getting the relief. Like when we spoke to the murder detective, you know, he talked about the how dark the sense of humour is with the police. And that, again, it's a coping strategy to offset I guess, all the heavy stuff. And like you said, it's done at appropriate time.

Hui-wen:

Yeah. And being in paediatrics, I tried to actually incorporate our patients where we can, I had a little kid who was recovering really nicely from surgery, and he was getting restless in his room. And so I said, you know, 'let's go take a walk around the unit', his mom came with us, and they put a little saline syringe in his hand and just told them to squirt people at different nursing stations as he saw fit. just sprayed coworkers as we walked around, and it was great.

Chris:

If there was a scale of one to ten, with one end being the loss of life and the other end being fit and well and leaving the hospital, you know, I imagine that you spend most of your time and most of the patients around the end near loss of life, do you get to celebrate often good stories of recovery and against all odds, you know, this child is now doing well? Do you get to see that side of things, because you're in intensive care?

Hui-wen:

That's a great question. I would say, so there, there are sort of layers of that. There are some patients who come in, they catch a respiratory virus that sends them through a rough patch, but they do okay. And you kind of know, generally speaking from the beginning, like certain patients, they're going to be okay. So you see those recoveries, but you, you never quite worry about them as intensely as you do other patients from the get go. So there are those recoveries that we see. And we're like, 'oh, we knew they were going to be okay'. There are some patients where they recover in their stability enough to not need ICU care, but they're still fighting a lot of, or dealing with a lot of chronic long term health care issues. And so while we might be able to transfer them out of the floor and say, 'Okay, well, you got through this one bad infection, but we also recognise you're going to be dealing with cancer still for many years to come', so there's that kind of recovery. And then there are patients were just against all odds, you know, you just thought all the brightest minds in the unit just thought there's just no way, there's just no way and then they somehow pull through. And you just stand there with your jaw on the floor thinking,'oh my gosh, this is incredible'. And they sometimes their parents are kind enough to send us pictures or you know, updates or videos from home and say thank you so much for helping us through that and look how they're doing now. And I was even lucky enough to have one patient who had suffered a pretty severe neurological injury and we weren't really sure which way this was going to go whether the patient was going to be paralysed for life or what have you. But this patient made really, really impressive progress. And a few of us were actually able to visit the patient in rehab, and met him in the gym when he was, you know, recovering. And we also never would have imagined that he would have recovered so, so beautifully, so, those, oh, those stories are just such a gift to us.

Claire:

We come up with people have different ways of talking about death. And language seems quite important for a lot of people. Some people do use the D word. Some people don't use the D word. And everyone we've spoken to quite different stipulations on how they like to talk about it either on the podcast, or just in life. Do you find that language is easier around death, because you work around it? Are you working with people who find it quite easy to talk about? Or is it different because it's a medical sense?

Hui-wen:

Oh, it's a great question. Because I'm realising that we still even in our context, still use a lot of the euphemisms of 'oh they past away', or 'we lost so-and-so' or'so-and-so gain their wings'. For some reason, I think we still have a hard time just saying, 'this patient died'. And I don't know if it's a paediatric thing, where you're just trying so hard to gently help the parents land or sink into the reality of this. Think we still have a hard time getting away from a lot of those, those euphemisms. When it comes to communicating with the parents, I think that the physicians are straightforward and honest, in using the word'death', 'we don't think your child will live', you know, or'we think they could die in the next day or two'. They'll be straightforward with the parents. But I think that when we talk amongst ourselves, for as much as we see death and dying, we still have a hard time saying like, 'Oh, what happened to such and such patient?' 'Oh they died', I think we still say, 'Oh, so-and-so passed away'.

Claire:

I've heard you talk on your TED talk about grief, being a teacher, and how you've learned a lot. Just talk a little bit about how you got to that point, because that's a really interesting concept that you've seen grief as a teacher and that it's not all bad either, grief isn't this big, evil presence, but also that you said it was natural. It's a natural process. So yeah, tell us a little bit about how you came to that conclusion.

Hui-wen:

Yeah, I very quickly have realised what a grief averse society we live in. And I think what I would tell people'Oh, I, I work in the paediatric ICU. And my work is so meaningful, because I learned so much about life and love and community'. But all people seem to hear is 'oh you just work in this really sad environment. And that just seems so hard. It just seems like it would be so life sucking. And it would just take everything out of you. And it just seems so hard'. And it is hard. But I think there would always be this part of me that would think, yes, it's hard, but it's so rich and so beautiful and so meaningful in the things about life that get brought to the surface so quickly, when you are faced with your vulnerability and you are faced with a lot of the big life questions of, how do we find hope? How do we learn to love each other when all the external contributors to what we thought was a good life seemed to have been stripped away? And we're here in this hospital bed, and we don't have our life as we know it, we don't even know if we have our future as we want it. But still, how do we find life and love and meaning and connection? In the space of all of this? Everything else has been stripped away. I don't have my lovely home. I don't have all the good foods that I would love to be eating. I don't have all all those external things, but does that mean I'm left with nothing? You know, I am. And I see these parents and their children and my colleagues to dig in so deep to see there's still hope to be found. There's still meaning to be found because I'm with my child here. And we may not have tomorrow, but I have them here, and what does it look like for me to love my child, even right here, right now? I think that in understanding how grief teaches us that the real substance of our life isn't really about every day just being carefree and external. It's just not, because that's not going to be guaranteed for any of us, all the days of our lives. Whether you end up in a hospital room or just, you're dealing with this or that at home, all the pieces that we think would make for a perfect life just aren't going to be there. So when we learn to live without or when those things are stripped away from us, and we start to grieve all these other external things, you really just pushed into, like the real meat of, what is life about? you know, who am I to my children? And and how do I be present to them? Chris, going back to what you had asked earlier of, you know, doing this work teach you about sort of anticipating things? You know, it's not this, like, oh, my gosh, every day, I'm worried about my children getting hit by a car, I do live with a little bit of paranoia, that's for sure. But I think it's learning that I want to live a life that builds a foundation that's set on rock and not on sand, because storms will come. And that's just a reality of life, like storms and grief are going to come and so what am I building my life on now? If I don't have that foundation, then when the storm comes, if I haven't already learned what I'm standing on. And if it's strong enough, being in the thick of crisis is going to be a really, really hard time to try to establish that.

Chris:

You mentioned a few times throughout our conversation, the word 'hope', and where it's questioning 'can hope be found?' or searching for it yourself, can hope be found in every type of loss that you encounter?

Hui-wen:

The breadth of my patient's experiences is so wide, and I want to honour the reality that it feels sometimes almost dismissive to look at my patients and their parents and say,' Oh, hope can be everywhere', you know, because their experiences are just so so raw. And their losses are so great their suffering is, is great. But where I see hope, still, as a thread that sort of runs throughout all of these cases, is a few places. I see it when, even as the parent's grieve their children and grieve the suffering and all that is before them. When the parents are able to find these moments of space of 'still I'm going to be here and I'm going to look at how to best love and find ways to comfort my child and advocate for my child', there's a real deep intimacy that comes between the parents and their children. You know, in those moments, I think a lot of the hope can be found in even just the presence of, I don't mean this to be self aggrandizing, but the presence of the healthcare workers of the fact that there are people who are willing to come into these spaces every day, as hard as this work is and say, 'you're not going to go through this alone, that there will be people who will show up to you, and come around you and do everything we can to carry you through these crises in your life, that there's a hope that comes with community and presence. Even if we can't fix things that we will be here, you will not be alone in this'. And then I think for me personally, there is just my own personal faith, and I look at the story of God and who Jesus is, and knowing that God is going to, was not averse to our suffering, that he stepped into it, that He knows it intimately, He lived it, he died. But He overcame it as well. That he was in all those aspects of deep suffering and loss and grief. That for me, that gives me tremendous hope that this is not the end, all the suffering, we see all the breadth of suffering we see that this is not the end of the story. And I think that's just, it's incredible.

Claire:

Makes me think back over previous guests, and almost all of them have got a story of somebody who did something and it might have been something just as tiny as sitting with them that helped them on that grief journey, you know, help them get to the next level and doing something and being there is huge. It's not self promoting in any way, because I think that is such such a key role that you play and other people can play that just by being a good friend. And one of the things that I heard you say somewhere else, I was in the kitchen when I heard it and I was like, 'Oh, that is amazing', was your friend who you message to say you weren't sure if you could come for coffee because you were having a really tough time with the grief of a patient. Just tell us what her response was in your words.

Hui-wen:

Yeah, I texted this friend and said, 'I am having a rough time with work. And I'm not sure if I can meet for coffee, I'm a little bit of a mess right now, we can postpone'. And I expected her to just say, 'Sure, I'll give you space, let's just postpone'. And instead, she messaged me back and said, 'You don't have to protect me from your grief'. And I thought, oh my gosh, I'm not alone. I don't have to pretend, I don't have to, even in some ways, take care of another person, like I can be taken care of today. And that was a real gift.

Claire:

Even without knowing it, we do that with people, we feel like we have to protect them from what we're going through, because we don't want to put it on somebody else. So for someone to give you permission to say, don't protect me, I can look after me, you be who you need to be do what you need to do. And I'll be there for it. I just thought that was just perfect. Well done friend, whoever you are, well done! How have you got on with the why question? Because I think you know, the why question is huge in the world in general - why do people suffer? But why do children suffer, is an even bigger question, I think for a lot of people, have you grappled with that?

Hui-wen:

I have. I have asked it. I don't necessarily actually expect an answer. I think I have asked it more as a form of just lamenting grieving. I think a lot about this, there's a line from this singer songwriter, his name is Rich Mullins, there's just one line from the song where he said, 'And it wouldn't hurt any less, even if it could be explained'. And I think that's such a true statement, I'm not sure that an explanation is going to actually be the balm at the end of the day. And as for the actual question; 'why?' I just think about, you know, sun shines on the good and evil of the world, and rain comes to the good and evil of the world, and suffering just befalls all of us in different ways, shapes and forms. And, you know, you might have a nine year old child who is in the hospital and is battling a new diagnosis of cancer, but their parents are very deeply present and loving them and helping them to feel comforted and secure and not alone, even as they go through that. And you man, you might have a nine year old out and about in the world who's healthy, but maybe their parents are completely negligent, and you know, there are so many different forms of suffering, I think that come upon all of us. And that much more I think it just speaks to the 'why' may not be really the question at the end of the day, it might just be'how do I live in love now? Where I am.' In whatever form of suffering I have now or we'll have tomorrow or a month from now? How am I going to live? What's my foundation going to be?

Claire:

What would you say to somebody who's fairly new, maybe in this as a job or career and he's just really struggling with this side of it of the grief and what to do with it? What would your advice be having done it for the last 12 years?

Hui-wen:

I'm a really big advocate of just being very, very honest with where we are, I think that a lot of people still look for forms of coping that just would help them escape. And ultimately it just becomes well then my escape has to be leaving the job, right? Like if I'm working this job. And I think that I just need to escape all the feelings and I can't escape the feelings because all these stories come to us shift after shift and month after month, year after year. And then eventually people say well, then the only way I can escape is to leave the job. Or sometimes personally something you know, a little bit darker, or worse, you know, there there are issues of suicide in health care professionals. That's a real thing. And I just I think that it's really important for us to not just look for escape, but to honestly tackle head on the reality of us being human in this work, and giving space for our humanity, whether that's the feeling or feelings, looking for therapy, finding ways to honestly work out what this work is doing to you, rather than'I'll just have another drink', or 'I'll just quit tomorrow', you know, I think there are more human ways for us to take care of ourselves.

Chris:

And it would be remiss of us to not be able to offer a flavour of some of the brilliant things the things you love the most about the role as well. So what are some of the experiences you get at work that just bring you joy and just you know, make you fly?

Hui-wen:

I think certainly, certainly seeing the patients that do you get to recover after a very, very long hard roads. Those make it worth it all, at the end of the day, I marvel at the teamwork I marvel at the family that I have, and my co workers where we are, it's like, you know, when you go through something really, really hard with a consistent group of people over a long period of time, and you just build such a deep camaraderie and understanding with each other of'I know the depths of where you've been', and we have a rhythm with each other, where you just look at each other, you know, what you're feeling, you know, what people need. And there's a very, very special sense of community that is really irreplaceable to me. I think, also the privilege really, of being present with these families, and we can't make everything better, but they're so grateful for our presence. And it reminds me that it still matters that we show up, even if we can't fix things.

Chris:

For you, yourself in your role, if you were to multiply something that you've nurtured and grown, that's been really healthy, and you can multiply it and give it out to others to take on and grow. Ultimately, I'm asking what's your Herman?

Hui-wen:

I would say it is the courage to go deep with the hard questions and to, to trust that as we go deep with a lot of our hard questions in life, that there are treasures and answers that can be found that it's not going to take you down this spiral of increasing despair, but that as we move past the superficial and just have the courage to dig deep, that that's where you build a foundation of rock and you sweep away the sand that you've been standing on. And you find that, 'oh, yeah, I went deep and I found a foundation'. And then when storms come, you've done the hard work of laying down that foundation. And there's a different kind of steadfastness and peace that can be done even when it's still a storm. It's the storm is very real still, but there's a foundation that you have, and I think that just comes with that courage of going deep.

Claire:

How many of us hate a call to go deep and run a mile? Or maybe you feel like it's a challenge that you want to run towards? A challenge that you're truly value. It's not easy, but it's always worth it.

Chris:

We really enjoyed our conversation with Hui-wen and appreciate the beautiful wisdom and insight that she shared. Thank you, Hui-wen.

Claire:

You can keep receiving what she has to offer through her social media channels and blog. We'll put links in our show notes to her social media and her TED Talk. But you can also read her beautiful writing online at www.heartofnursing.blog. And if you follow her on Instagram, you get to see her tortoises!

Chris:

As for us at The Silent Why HQ, we'd really appreciate you taking just a few moments to rate or review us on your podcast provider. Particularly if you're listening to us through Apple podcasts or Spotify or GoodPods, a moment of your time will help us into the future, you'll find out more about us and our podcast at www.thesilentwhy.com as well as on our social media channels@thesilentwhypod.

Claire:

After Hui-wen referred to the poem that she'd read, about the nurse that witnessed an emergency and subsequent death. And she mentioned that she was struck by the closing line that connected with her and that pull that some people have towards those sorts of situations. I just had to go and find it. It is a dramatic scene that is powerfully portrayed in this poem. So I didn't think twice about reading it but and there just didn't seem to be anything else that fit her work so perfectly and it is so well written. So here it is: Surgical Rotation, by Courtney Davis.“He was the first, first death, first cold palm on my heart, hand of frost, pulse of fear, he was only thirty-five, his wife waiting in the family area, he was in for a nothing surgery, bunion of all things, knobby growth not cancer not tumor, the anesthesiologist gave him the sleepy juice, the patient went out easy, surgery progressed, skin cut, bone rasp snips and grinding, nothing, then the gas man gave a little uh and the surgeon looked up, we all looked up, BP tanking, then the storm dam burst, spewed panic like ice circulating nurse she hit the button and all hell broke, docs and residents running, me flat against the wall, held breath, bam bam code cart, sparks and the flash of needles, blood stink, names of meds in my ears like static, like shiny wires screeching, then absolute hush, blank eyes, death like a building fell, death dust rose and settled, everything quiet and gritty, everyone with their particular duty, nurses here, there the senior resident given the task, long walk to the waiting room, speaking the wife’s name in his Bombay lilt, her scream shot all the way back to OR 3 where I stood struck dumb, enthralled, all of me bright with this hard desire, let this be, let this be, let this be my life’s work.”

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