A great relationship with my grandfather
When I was young, my Bapa, my grandfather used to call me mongi bai. It was his mother’s name. You see, his parents both died and he was orphaned at 2 years old. When I was growing up, he would say that I was his mother’s soul, come back to spend time with him.
We were really close, he lived with us and would often take me by bus to the nearby mall and buy me not 1, not 2 but a whole box of doughnuts, the ones with the sprinkles on top. I’m sure to the dismay of my parents!
In his more sentimental moments, he would ask me to cook for him. To make him his favourite dish, it’s called Kitchadi. But I was a kid, preoccupied with playing and running around and reading and I had no interest in being in the kitchen, except when my mom or grandmother would ‘ask’ for help.
My big regret
When I was 13, bapa had bad stomach pains that wouldn’t go away. We took him to the hospital, and he never came home.
I remember visiting him in the ICU, leaning down and whispering in his ear, I’m sorry Bapa, I never made you kichadi.
I whispered because I didn’t want anyone else to hear. And I didn’t tell that story for many years, in fact, even now I only remember telling it a handful of times, probably to my therapist. Because I felt so bad about it.
The perspective of age
Looking back as an adult, I can remind myself that I was only 13. I didn’t know what was going to happen, I didn’t know how to cook and I certainly didn’t know I was going to run out of time with him.
Back then, I just figured he would be there with me forever.
I took time as a given. And while I try not to take anything as a given anymore, there are times when I still do. I still feel like I have more time. More time to do the things that I want to do, more time to see the people that I want to see, more time to accomplish the things that I want to accomplish. And hopefully I do have much more time. But I don’t want to take it as a given.
We have a tendency to do that sometimes, don’t we? I’ll visit later, I’ll call tomorrow, I’ll spend the time after this busy phase of life.
These things that we may or may recognize as important, but that don’t feel urgent, get postponed.
And instead we prioritize the things that are urgent but maybe not as important – a meeting, cleaning, running errands.
What happens when you run out of time? What becomes more important and now also urgent?
Welcome to the XO Conversations Podcast. I’m your host Dr. Rishma Walji. I’m a clinician and academic, and I help people to approach life more proactively, rather than reactively. I’m all about personal growth, being intentional and living a life that feels extraordinary.
Today I’m chatting with Dr Jacqueline Hui. She’s a palliative care physician and associate professor.
What is palliative care?
J: So I’m Jacqueline, Dr. Jacqueline Hui, I am a palliative care physician. And I’ve been practicing close to 20 years now. And most of my work has been in acute care, but I also do some community care as well and I’m also teaching, and most of my teaching is in palliative care as well.
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness, so the goal is to improve the quality of life for both the patient and the family. And often, it’s provided for patients at the end of life. So she spends her time with people who have a very different perspective on life.
What it’s like to be with someone in their final moments
J: The experience of having conversations with patients, and what are those conversations and their intimate conversations, so they’re usually conversations that other professionals don’t even get a chance to have. And some of these conversations are so personal, difficult to chat about, even with their own family and their best friends and loved ones. Not easy to share about how you feel about dying. So I feel like it’s a privilege just to be at the bedside, and just to listen, and really listen intently.
Jaquie told me that usually the patients are sharing about their life. It’s a review of their life, and sometimes it’s about things that were great, and sometimes it’s about things that they regret.
What if you have regrets before you die?
J: Usually patients that have very few regrets actually die very, I would say have a smoother death. Because they’ve lived life, they feel like, you know, sometimes they want more of it. And it just, they weren’t given that opportunity. But they feel like they’ve lived as best they could. And although time is short for them, they don’t look back and say, I wish this and this and this and this. But often people with big regrets, whether it’s relationships haven’t done this or enough. Usually it’s around relationships, those, those patients sometimes have a harder death. And because they want more time to rectify, or they’re living with that suffering. And it’s they haven’t really made peace with it, maybe.
R: What do you mean by it’s a harder death?
J: I think acceptance of the dying of the dying process of, of you dying, makes it makes it a little easier, you know, when it comes to symptoms, when it comes to emotional suffering, spiritual suffering. So it’s beyond just physical suffering. Yeah.
I was supposed to start living
Jaquie recounted an experience with someone who impacted her deeply. It was one of her first patients when she was a fellow.
J: So when I was training in palliative care,
It was a lady in her 60’s who had just retired. And she asks Jaquie very frankly, how much time do I have?
J: months, maybe it was a very hard conversation. But what I think was hardest is, at one point, she just stopped. She wasn’t interested in more medical information. And she just said to me, you know, I just, I just retired a few weeks ago, they even threw me a party. I was supposed to start living, I suppose to start traveling and enjoying and I I remember this so clearly, and she looked straightened into my eyes. I was just a young resident still and said, “Don’t ever do that. Don’t wait.” And, you know, that’s just one example of many where I’m forced to look at my own choices in life. So I think these, these patients have taught me more. Since then I, yeah, then I sometimes even recognize, because they taught, they teach me how to live, and to not be really caught up. Because like, Life is so unpredictable can be taken away any, anytime. I’ve had very young patients as well in their early 20s. And there’s, it’s never easy, but it just becomes harder. As I think, when you’re when there’s so much opportunity and life still, and you know, it’s cut so short.
What can I say or do for someone who is dying or grieving?
Professionally and also personally, I’ve been around chronic illness, pain and death. Patients often asked me, what do I say, what can I do. I don’t think there is really anything you can say to make someone feel better in that circumstance. You can’t change it, or take away the pain. What you can do is be there for them. Supporting them in whatever way they need, whether it’s holding their hand, listening, helping with chores etc.
So I asked Jaquie her perspective as a health provider at the bedside of her patients. This is something she sees almost every day.
J: And mostly, it’s just, again, really active listening. And and I think they want someone to share this with, right. And so I always tend to just acknowledge that, that thank you for sharing with me, I know this is not easy, right?
What’s really important in life?
J: So and I tend to reflect on that before I go home. And when I go home, maybe and try to park it like that these are very hard conversations. So that there is a bit of compartmentalization just with the work that we do, but, but it does influence you. And it reminds me not to get so caught up in the day to day, things that either easy to be frustrated about someone just cut you off, you know, while you’re driving, and your son lied to you about your homework, his homework, right? Those are those, that’s life, it is hard, but in the context of truly living. And making the most of what we have today is really remembering. And reflecting on, what is this all about? And I don’t think we have that space and time often. To do that, because of our culture, how much we work and how much we do. We’re doing society.
So often we’re concerned with productivity, we need to do more, work harder, move faster. But growth can come in different ways. And sometimes taking time off, slowing down, taking some time for ourselves is actually the best action we can take.
We talked about what’s really important in life. And I think it’s hard as someone who is living each day, thinking that we have more days because we have longer term goals and dreams.
Looking beyond the day to day
So even if say our families are more important than work, we spend our time working to try to provide for our families, or to help others, or create something meaningful in society, or to employ people. If we want to have far reaching impact, it’s sometimes hard to juggle our days so that we’re not just focussing on what’s urgent but also what’s important, before time passes us by.
J: It’s not on their obituary, what a great worker 80 hours a week. It’s not what people are remembered for. So I always want to highlight that when people say, What about work, you know, I said, What about work? You know, this is how much time you’ve got, you know, how are we going to what’s important to you. But there is one patient who I still remember very vividly as well, where work was important, but in a very different way.
It was, he was a mentor. And he said, what, what I he asked me if I could work as much as he could. And I was really curious about that. You know, most people don’t want to work till they die. So what was important? Why was it so important for him? And for him? It was because he mentored these young, young colleagues, he saw himself as a mentor, so he was writing letters to them. And that was so moving, and he was on his laptop working away. And you’d be like, Okay, let’s just make this efficient, so I can get back to my letters. But he had, he had a legacy to pass on.
Leaving a legacy
This idea of leaving a legacy is another important thing that people bring up to Jaquie. They want to be remembered for something.
J: And perhaps that’s what makes it easier if you’ve already done that, whether, you know, the connections you’ve made in life. But when people feel like something’s missing, or something’s disrupted or something’s not complete, dying sometimes can be a bit harder.
This is where I wonder, how do we bridge the gap between feeling more at peace with your life vs being in the grind and getting pulled along with momentum of the day to day.
Research on what’s important in life
J: I think if I could distill it down, and there’s just there’s been some research on this, looking at is it religion is it, accomplishments and so on. But it boils down to connections, and the community that you have. And so, you know, if, if we take all these lessons learned from so many patients that we’ve seen, not just myself in palliative care, we all know that it boils down to really having these deep connections and feeling supported and loved. And if we spend more of our time doing that, instead of focusing on the others, little things in life, seemingly large at the time, but really is people are usually remembered for being a great friend, father, mother, person. So I think we can take a lot away with just that.
People don’t tend to wish “I wish I spent more hours on paperwork or I wish I spent time on my phone”, although of course we get bogged down by those things in everyday life. Think about it for yourself, what do you want to spend more time doing?
What do you wish you spent more time doing?
Here’s what Jaquie sees most often.
J: A lot of its travel. And people wish they just experienced more. I wish I traveled. Right, and and some people get to live it out. And even if they’re really sick, and some people never had that opportunity? Yeah, I think experience is usually a big one on people’s list of to do. Wait till after retirement, where to the kids are grown up with we’ve paid off our mortgage, all important things, but it does. Take away from living in the present.
Don’t wait until it’s too late
I remember this one. My grandparents used to say the same thing. They worked so hard, to provide a stable life for their future children and grandchildren, and then we the time came when they were able to travel and have experiences, they didn’t have their health, or even the strength to lift their suitcases.
They had a hard life and they kept telling us, live. Live now, you never know what will happen tomorrow.
It’s not easy to live in the present when you have responsibilities and obligations, but it’s a good reminder to really pay attention to how life is unfolding and what direction you want to go in.
J: I’m just like everyone else too. I get caught up. Right. And I am so appreciative when patients have these chats with me, their life reviews, the serious conversations, and I, I’m always coming out richer, and more mindful of what I do have. So it has made me grateful. I am pretty, you know, I’m a physician. So pretty high strung, but it’s made, I do think it’s made me calmer and more reflective. And I, I really am trying my hardest to live in the present. And I teach that as well for my residents who there’s always the next step, especially in medicine, there’s always something more getting into medicine, getting into residency program, getting the specialty, getting the perfect practice and, and then you know what other accolades and what other achievements and can you do? And it seems a little endless and trying to enjoy the journey, and just being grateful. And if your life ended today, would you be okay with that? Would you have felt that it was a good life? I did my best. I have great connections, I will be remembered. So I think it’s made me more that I’m as imperfect as everyone else. And I Yeah, but I think there’s an element of reflection there that I come home with usually.
Creating emotional boundaries as a care giver
Yeah. How do you separate I mean, this is maybe going off tangent, but when I was in practice, I dealt with a lot of emotional things as well, like women would have miscarriages or you know, like there was all these things that had to do develop strategies to sort of be grateful to be there and be part of that person who can be there for her and have her talk to me about it. But then also to separate it at the end of the day, because having those serious conversations are so valuable, but at the same time, it’s heavy.
J: for sure. And if we think about the stages of grief, they’re all emotional heaviness until we get to acceptance and even during acceptance, it’s heavy. So anger, denial, all of it is heavy. So I, you know, you can never truly separate because it is a part of you. But there is, I think, some strategies where you do try to leave it behind.
J: One of the ways that I teach my residents, sometimes it’s something very simple. Even pre COVID, we were always using alcohol in the hospitals, and is a way to obviously sterilize. But to me, it’s also a bit of washing, like resetting. So between patients, I want to give my next patient the my all. So my last patient, we had hard conversations, difficulty accepting death, or just having hard conversation, I use that alcohol wash in between to reset, to breathe. And to start again. We also did something at my workplace, because we recognized we just had a period of a lot of younger patients maybe and having a hard time, young moms, so on. And so we were I think carrying home a lot of that heaviness.
J: So to your point, like what were we doing about it, and we were finding it helpful to talk about it, of course, but we also physically created something we, we together as one of our team building activities, we built this, we went to a glass blowing place, we created these pendants, and we wear them with our name tags, we hang them. And then at the end of the day, we put it back in a little box. And when we start our day, we bring it with us. So it’s an it’s very physical, as a reminder to try to keep it a little bit compartmentalized because we fully we can’t fully at times. But as a way of letting go and to give now I’m going home for my family for the people that matter to me. So that’s, that’s just a strategy that we’ve come up at work. And I’ve really enjoyed that.
R: Yeah, that’s beautiful. We have so many strategies to for for boundary building. And I had a very similar one to your alcohol sterilization where I had a sink outside of my actual treatment room. So I would go and I’d obviously have to wash my hands in between every patient and many, many times during the day. But somehow it turned into a ritual where I would go there and just take a deep breath and wash and then that would be like my way of cleansing my physical body, but also my emotional space so that I could be present for the next person. So it’s very similar to
J: Yeah, no, and I really wish we could teach that more. Right? Just those little spaces makes such a difference. I know you’re probably feeling the same way, Rishma
R: Yeah, yeah, absolutely.
Family experience for someone at the end of life
After touching on the patient experience, the health care provider experience, what about the family experience.
Jaquie said it’s always hard for the family, not just the personal emotions but also family dynamics and then add to that another dimension like COVID and it changes the process in a difficult way.
It has to be a lonely experience for patients, when they weren’t able to interact with family members or having visiting hours.
J: Absolutely. And I yeah, not having your supports around has, I think made that dying from COVID experience very difficult. And I would say a lot of family have probably complicated grief, from those experiences, not being able to say goodbye not being there. Knowing that they couldn’t breathe, they were suffering all of that, for sure.
J: And yeah, it has been challenging on so many fronts, a lot of these patients are also on a lot of oxygen. So, you know, just remembering our last few patients having conversations for coming off oxygen? And what what does that feel like for a family member to make that decision when they can’t be around? Trusting the healthcare professionals to do the best for their family? And, and trusting that you know that they will die peacefully?
Fighting for life during terminal illness
Jaquie brought up an interesting point about fighting for life. She said that there’s this perception that we need to fight, always fight, until the end. But it’s not right for everyone.
J: My my loved one is has always been a fighter, we hear that all the time, well, being a fighter, and someone might have it other different perspective for the family, including the patient saying it’s been hard. I’ve suffered many years already or for a while. And it’s not really what I want. I’m in a lot of pain or suffering. And I don’t want to keep living like this, I don’t have the quality of life that I need to keep living.
She said something that I found profound. That we don’t talk about the fact that we all die. In her work, it’s more immediate and there’s an understood timeline. But there’s still this perception that we have to fight it until the end.
I’m a fighter, I never quit. And then it creates a lot of losers. Because death is inevitable. We don’t talk about it. So if you don’t fight that you’re a loser. And we’re just hoping to change that mindset, right to say that this is part of life and not fighting. It doesn’t mean you’re not when you’re not a fighter. What are you fighting for quality of life? time with family?
Yeah, there’s no winning or losing the battle.
R: it’s not a it’s not a race or competition, like there, there are parts of life that you just can’t win. And I think we there’s this tendency, obviously, to try to do it the best we possibly can, like, be the best at, you know, handling pain or whatever it is.
It’s not win or lose, finite game
J: And, and I think our the way, we’ve marketed a lot of these, a lot of these foundations have marketed that way. So let’s beat cancer, conquer kidney disease. You know, we need to, we can fight this right. And so that marketing creates a bit of a war cry, which makes it a battle which make your participants so which side are you on?
R: Yeah, yeah, for sure. I can see how it’s hard to let go, you may be need that mentality, if you if you’re likely to get past it, and you need that motivation, or that energy or that drive. But then if you’re going down a different path, and you’re headed more to palliative care, then it’s a harder thing to let to hold on to.
J: Yeah, that transition point is hard. And for some people they can get, they can see, okay, I’ve done everything. I’ve gone through chemotherapy treatment, all that hard stuff I’ve done. But if it’s not working, can I can I accept what’s coming next?
What can we learn from this, to be more mindful now?
So let’s transition this conversation a bit to what can we learn from this. I asked Jaquie, although she’s human and maybe not perfect at it either, what has she learned from working in this field. What can she share that she’s trying to be mindful of in her own life.
Listen to the rest of the episode to hear what Dr Hui is doing in her life and the lessons she takes away each day for her own life.
Losing A Family Member
This was one of those episodes that resonates with me so deeply. I was fortunate to have a big extended family. And that also means that I also had many people to lose. Over the years, I’ve experienced many of my loved ones pass on.
Perhaps it’s one of the reasons I’m so passionate about living my best life, because I was so acutely aware at a very young age, how precious and unpredictable our time here is.
It would mean a lot to me to hear your stories, about life, love and loss. You can let me know anything you’ve learned along the way or if anything from this episode stuck with you.
I’d love to hear from you, you can email me directly at firstname.lastname@example.org
Stay tuned in the next few weeks, we have some really great episodes coming up about dealing with trauma and grief. And not all the episodes are heavy, we have some really inspiring conversations, one with a gold medalist – she’s really amazing. And I’m working on one about friendships and another one on creativity.
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