Ep 58: When Your Loved One Faces a Serious Illness with Dr. Delia Chiaramonte

Dare to Dream Physician Resources:

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https://daretodreamphysician.com

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Dr. Delia Chiaramonte and Institute for Integrative Palliative Medicine Resources:

The Institute for Integrative Palliative Medicine
https://integrativepalliative.com/

The Integrative Palliative Podcast
https://integrativepalliativepodcast.com/

Integrative Palliative Medicine Interest Facebook Group
https://www.facebook.com/groups/931224730912640

Dr. Delia Chiaramonte on LinkedIn
https://www.linkedin.com/in/deliachiaramonte/

Dr. Delia Chiaramonte on Twitter
https://twitter.com/DrChiaramonte

Transcript

Dr. Chiaramonte, Guest: So one example I'll give is my, my other daughter has, life, potentially life threatening food allergies. And so when she was little, I had to send her to school with all these people, with peanut butter, everywhere, and teachers who didn't really get it. Right. So, so you do everything you can, and then you focus in the now and let go of the outcome.

So I send her with an EpiPen and I made her own cupcakes and I taught the teachers and I taught her how to eat my daughter, how to use an EpiPen. And then I send her to school and then I could spend the whole day worrying that she's gonna die. But why do that. Right. I could say I did all the things that I could do now,

I'm just gonna focus on the moment and not allow my mind to go to a scary place because it hasn't happened yet. If it happened, God forbid I would deal with that moment, but don't go to that moment before you have to.

Dr. Gray, Host: Yeah, there, there are two things I wanted to add to that wisdom that you shared. and you talked a little bit about, you talk about future cuz anxiety. A lot of it is future looking like, oh, what did this happens? What did this happens? the other thing that I see often, is like the, the narrative of, what happened.

So the, the past, right? Like, oh, maybe this person, my loved one wouldn't have this problem right now, if X, Y, Z happen. Or if you know this doctor, someone made a different decision and, and just dwelling on that narrative of what happened in the past and, and that's what's causing the future problem or the, present problems.

And, and I would say that's also not focusing on the moment

Dr. Chiaramonte, Guest: Exactly. So I have always, when I'm seeing patients a big piece of paper with black Sharpie that says past now future, and then now is circled, cuz that's the good one. The past is all the things you just said. And all of those things might be true, but they're not helpful. That's the reason not to focus on them.

They're not helpful because whatever happened before already happened and we literally can't change it. So getting stuck there only makes us feel worse. Now it doesn't have any benefit. And so there's no purpose in spending time there. It doesn't mean it wasn't bad or it didn't upset you, or, it didn't happen.

It did, it happened. You didn't like it yucky, but perseverating on it now only makes now worse. And so if our goal is to try to make the, now the best that we can, we wanna do, as you said, not focus on the past or the future spend as much time as we can enjoying this moment that we have right now and making it as good as we can make it.

So if our, if we have negative thinking and we're having trouble with that, then maybe we can, get some, some therapy or read some books about how not to do that so that we can make this moment as good as we possibly can and live our life this moment. And then the next one and the next one and the next one, and that is literally the whole focus of integrative palliative medicine is to figure out how to help people do that because the medical system is really good at working on diseases.

Thank goodness, cuz that's great and important, but not as good at working on this idea of making people feel as good as they can today. Right now, physically, emotionally, and spiritually. And, and I think, and probably all palliative doctors and a lot of non palliative doctors feel like that's really important too.

Dr. Gray, Host: Hmm.

Dr. Chiaramonte, Guest: And, and this whole palliative concept, it's not just for palliative medicine doctors, it's not just for specialists. Primary palliative care is what every doctor does. So just like every doctor will help a person in pain. There are pain specialists, but also every doctor has skills in helping a person who is dealing with pain.

Every doctor should, and most probably do try to help people feel better right now, while you're getting chemo, what can we do to help make you feel better? And so just boosting up our skills in that I think is really important because. Life's tough and we all should do the best we can. You know, it sounds kind of hokey, but I actually think this, if we all learned this, the world would be a better place.

If we all helped manage our anxious thinking, which is in the future and our depressive kind of ruminating thinking, which is in the past, and we all used our tools to make our now the best we can and to focus on the things that are really important and stop focusing on stupid things that don't matter.

Dr. Chiaramonte, Guest: We all did that. I think the world would be a better place.

Dr. Gray, Host: Mm. Yeah. And to add, the second thing that I wanted to add to that, the dealing with uncertainty. And we've talked about this, before in our conversations, is, is being intentional, right? So part of it is, letting the now be, and, and just focusing on the present, but just also being intentional about what is it that you want the present to be.

Right. And, and when you take the time out to, imagine what it is that you want to get out of the time that you have with a loved one who's facing, serious illness, and going through a difficult time with a lot of uncertainty, are they gonna get better?

Are they gonna continue suffering for years and years or a loved one who's dying and, and not knowing,when they're going to die, but just also, are they, are they gonna be suffering or, you know what's gonna happen to them. And when you're going through that, Take some time out and be in a place where you're, you're not focusing on the future or the past, but just be in the moment and imagine, what is it that I wanna, how is it that I wanna spend my time?

How is it that I wanna remember this period in, in our life together. and, and some of the questions that we had talked about in the previous episodes, this is the last. Eight hours that my dad is going to be conscious, do I wanna be doing my clinic and, trying to run up in 

Dr. Chiaramonte, Guest: Or the dishes?

Dr. Gray, Host: clinoc 

Dr. Chiaramonte, Guest: dishes? 

Dr. Gray, Host: Yeah. right. Or the dishes, or planning the, the future, or being mad about, maybe what, one doctor said or did to him. or do I just wanna be right next to him and, and just, be there, just if any happens to wake up for even 10 seconds to, to be there when, when he does.

 and so it's, it's taking some time out, and being in a place where we can really just imagine, what is it that we really want, what is that important thing that we want? and when we do that, I think you do that with the intention of staying in the present. That just becomes a very powerful way of, of living.

[00:37:30] Dr. Chiaramonte, Guest: A hundred percent you are so right. And one tiny thing that I sometimes would ask patients to do is to imagine the future and then look back and trying to prevent regret. And I often have said that regret is one of the worst emotions. So let's just go a little bit in the future. Imagine you did whatever thing you're thinking about doing and you and your loved one passed.

Would that be okay? And sometimes it is right. Like sometimes people have spent a lot of time and they it's time. They've said all the things they need to say to their loved one and they need to, maybe they're in the hospital, they need to go home and take a shower and we will often say, that's perfectly fine that you do that.

You should do that, but we just want you to think about it. If your loved one passes while you're gone, will that be okay? Would you like, will you kick yourself for the rest of your life or will that be okay if you said all the things you need to say, and if they say, oh my gosh, no, if he passed while I'm at home, I would never get over it.

Then we might suggest to them, you know what, given how it's looking, we suggest you don't go home. But if they say yes, I've said all the things I need to say, I hope that he's here when I come back tomorrow. But if not, I, I feel like I've had closure. Then, then we would say, great, go home. Definitely should go home at rest and take a shower.

So it's not, should I leave or should I not leave? What matters is the person looking, go imagine forward and look back. Will you have regret? And if you'll have regret, then you shouldn't do that. Then you should do something that won't give you regret.

Dr. Gray, Host: Hmm. That's so, so wise. I, I have something more to add, but I just wanna make sure you're okay with your time. Cause I thought you okay. Good. I that is such so wise and, and I will share, two things that I went through in my life. One that I regretted and one that I acted because I knew I, if I didn't do it, I would regret it.

And so the first one. I was in my twenties. I was actually, doing a post back program for, for, to get into medical school. and, and my grandmother, I was in Connecticut at the time. My grandmother was in San Francisco. she was dealing with, end stage cancer. and, I had seen her, I, I, I saw her twice in the last six months of her life.

and then when I was. in the middle of my post back program and about to take this exam. she passed away and my family asked me, do you wanna go to her funeral in San Francisco? Without any sort of, any orientation at the time, and I was like, first of all, she's already passed.

Dr. Gray, Host: And then I saw her when she was, alive twice. and then I have this exam, that's refer me and, and I'm premed. So, I have to do all these exams. And so I decided at that time, no, I don't need to go to her funeral VI seeing her when she was alive. And to me, it made sense rationally.

It made sense cuz I'm like the person's dead I didn't think that much about it. My. My mom shared with me, what, what happened at the funeral? So I had an idea of what went on and then I don't even know when it started. but I feel like years later, I, I felt this regret.

I was like, I never had closure with my grandmother's death. Because I didn't go to the funeral. And I think that regret maybe started when my mom shared with me, just what the funeral was like, and it wasn't like it was anything extraordinary or fancy. It was just her funeral and, and her burial.

 and so as someone, I just remember, even when I was a teenager, there was an exercise that we did, which was, you are imagining, going to your own funeral and what people say about you. And I remember, I think at the time I was like 15 or 14 and I was like, mad. I'm like, why would I care?

I'm already dead. . So that was where I was coming from. I was like, the person's already died, what's the big deal. and so it wasn't until years later, when I. Kept feeling this regret, wow, I can't, I wish I had closure and I wish I went to the funeral, but it's passed.

Right. So there's really nothing I can do about it. I mean, of course there's probably something to do. I probably could go to San Francisco and just, visit her, visit the cemetery and, probably do something there. so that was, many years ago. And then with my dad after he passed.

So it was a little crazy because COVID was in the house, you know, went through everybody. We had at one point, I think nine people in the house, three kids and, these adults and, and we all ended up getting C. And so when my dad passed, a lot of us had gotten over it, but, there were some people that were still actively dealing with it.

and so my mom actually said to me, she's should we even have a, a funeral because of what's going on,certainly you won't wanna bring this to somebody else. and I. I had immediately said, I said,no, like we, we need to have something and it doesn't have to be right afterwards, but we just need to have a service to, to remember my dad by.

 And so I was surprised because, the other thing was because my dad didn't wanna talk about dad. I, we didn't plan his death at all. Like we hadn't picked you know, the funeral home, what he wanted. and so we had to figure all of that out But I just knew, like, when my mom said that I just knew that we, we had to plan something.

And then, so I learned all these things about,the Memorial's gathering, you could do anytime. So, so we ended up picking, 10 days after when everyone was gonna be, way past the, the COVID concerns. And we held this, we basically put together a Memorial service, which I never thought I would put together, cuz I'm really not an event planner and you know, I'm an introvert.

I don't really like to get large gatherings. But I knew I had to do it because as a way to honor my, my dad. And so I'm just so grateful that that I did that because I knew that if I didn't, I, I would've regretted it many, many years later.

Dr. Chiaramonte, Guest: Those are powerful stories right next to each other. One thing strikes me about the first story. And if you think back to this idea of control, what you can and let go of the rest, so you can't change what happened, but it's still present for you with your grandma. So maybe you should, at some point when it works, go to San Francisco and have a closure ritual for yourself

Dr. Gray, Host: Mm.

Dr. Chiaramonte, Guest: Because you can control that. Right. And then, perhaps that lets go of that part. That's stuck.

Dr. Gray, Host: Yeah. I, I actually didn't think of it until we were chatting. And, and now that you say that it makes a lot of sense and yeah, I may do that.

Dr. Chiaramonte, Guest: That's great. one thing that strikes me as important to, to talk about is sometimes when you're with a loved one who is probably going to die from their illness, they will throw out little subtle, one liners that you could easily miss.

Dr. Gray, Host: Mmm.

Dr. Chiaramonte, Guest: your dad did not wanna talk about debt. You checked. And he didn't, which is perfectly fine, but sometimes loved ones will say, I don't know. It's probably getting close

Dr. Gray, Host: Mmm.

Dr. Chiaramonte, Guest: And often what their family members will say is don't say that. No, no, no. Don't say that be positive. Which shuts down the person, they are feeling something, maybe even a little fear about death. And they were throwing out a little lifeline asking to share it with their people.

And so number one is if it happens, try not to shut it down and you can just ask the person some open-ended question. Oh, what do you mean? Tell me more about that. What are you thinking? You don't have to answer it. You're just giving them an opportunity to share. And sometimes people get loved ones, get scared because they don't wanna ask them.

Are they afraid of dying? Cause what if they say yes, what am I supposed to say about that? So I think it's one thing I wanna share is that there's generally three kinds of things that make people afraid when they share that they might be afraid of dying or you get the sense that they're afraid of dying.

It's generally one or several of these three. The first is. The process of dying. Sometimes people are afraid they will suffer, they'll have pain, et cetera. And for that, the answer really is hospice. So we have experts in pain management, they come to your house, they're available 24 7. If you have pain in the middle of the night, you call them, they come to your house in the middle of the night.

So that one you can reassure the person. Oh no, we won't let that happen. We will get the experts in here. There's great medicines for all the things that might happen to you. we will not let you suffer. So that's fear. Number one, fear. Number two, that some people have is the afterlife. What happens after that?

Some people have no fear of that because they have a religious construct and they're sure what happens after death, which is great. but some people. Are scared cuz they don't know or they may be scared cuz maybe they did something in their life that they feel like they might be about to be punished for.

Dr. Gray, Host: Mmm.

Dr. Chiaramonte, Guest: Hurt someone or cheated on someone or something. And those fears can come back and they can be hard to talk about. So if somebody is worried about what happens after death, then it's sometimes helpful to ask them, is there a kind of person that might be helpful to talk to a religious leader that would be helpful to talk to?

Or your brother who used to have philosophical conversations me like who, who could talk to about that? It's important to get it out. 

Dr. Gray, Host: Mm.

Dr. Chiaramonte, Guest: And then the third thing that people are sometimes afraid of is will their family be okay without them. And so there's a two things you can do in that to reassure them in that direction.

One is if they're ask. what are you worried about? Exactly. Cause sometimes it's you'll be sad, but sometimes you don't know how to cut the lawn. know, sometimes it's practical things. You don't know the computer passwords. So if it's practical things, they can show you or tell you, you could go with an notebook and say, okay, tell me all the things like, what do we need to know?

What are the passwords? How do you do the bills? What are you worried? What do you want us to do about X, Y, or Z thing? Tell us, download all your stuff for us. We'll put it in this notebook and then we'll know. And then the other thing is, if you can find it in your heart to reassure your loved one, that you will be okay, that you're gonna miss them dearly.

And it will be so sad, but you're going to be okay. 

Dr. Gray, Host: Hmm. Yeah, those are so good. I really like how you, because you have so much experience in this area that, that these are the things that commonly come up and, and this is what maybe the, the person who's dying can maybe thinking about and, and maybe have a hard time verbalizing.

would it be helpful If they don't bring this up to somehow, bring it up in a gentle way to them. so even saying oh, I just remember when my father-in-law was dying. one of the things that, we assumed that we would help him with was, some, some of the, like doing taxes, for my mother-in-law and, and so he didn't bring it up, but I just had my husband ask him like, oh, tell me a little bit more about this. Yeah. is that, is that

Dr. Chiaramonte, Guest: Absolutely. No, that's great. That's great. And there's a few different pieces of it that you wanna give them space to share. I think just generically, it's worth saying if you're, if you feel like you can hold the space for your loved one, Hey, just, I want you to know if you're, if you ever have scary thoughts that, you think you can't talk to people about, you can talk to me about them. So that's the most generic way. If you're afraid to say death or anything, you can, you really should say that because you've then given them express permission to talk to you about whatever scary thing they might be thinking about. If you feel comfortable saying even sometimes people who are dealing with what you're dealing with, worry about death.

If you ever wanna talk to me about that, I'm a safe place. You could talk to me about that. That would be great too. And then if you know the person. And you know, that they're kind of adoer, a control freak. Like they were in charge of everything. You can probably hypothesize that they might like to download some of their information.

For example, if you know that the person is a Uber, lovey dovey person who adores her children so much, you probably know she would like to hear we're gonna be okay.

Dr. Gray, Host: mm. We love you. We're gonna miss you so much, but we're gonna be okay. And then if you can share why you're gonna be okay, that helps too.

Dr. Gray, Host: Like we're gonna be okay because we're gonna support each other. We're gonna be okay, because you've put all of your love and knowledge and wisdom into us and we have it and we know you'll always be with us or something, I, I had one family member say to her dad who was dying. I'm gonna be okay because my husband's gonna take care of me like you care, Mm.

Dr. Chiaramonte, Guest: Think about what they might be worried about or ask them. But even if they don't say you can reassure them anyway, of what you think might make them feel better. And if they, if it's not right, they'll tell you. No, I don't care about that, but they'll probably tell you, but I do care about, X thing,

Dr. Gray, Host: Mm,

Dr. Chiaramonte, Guest: But in my experience, even the most closed mouthed, people often throw out little, one liners asking for someone to notice.

And so I would really encourage you to just keep your ears open for that and work really hard, not to shut them down and they can be things like, those doctors say the chemo's gonna work, but I don't know.

Dr. Gray, Host: Mm.

Dr. Chiaramonte, Guest: Right. Don't don't just blow right by that. Yeah. What do you mean? it might not work.

Yeah. So you're thinking like it might, the cancer might keep going. Yep. So what do you think about that? Tell me more. And they, they may say,I'm not gonna be here that long. I, I probably won't be here for Christmas and just don't shut it down. Just say, what do you think about that?

Dr. Gray, Host: Mm,

Dr. Chiaramonte, Guest: What do about that? And it, if it's not a feely kind of person, don't say, how do you feel about it? Just say, what do you think about that?

Dr. Gray, Host: mm.

Dr. Chiaramonte, Guest: Just keep saying that. I don't know. I probably won't make it past Thanksgiving. Yeah. Wow. Hmm. Tell me more. What do you think about that? And people want to be able to share, and if you don't let them share, they carry all this alone.

Dr. Gray, Host: Yeah. Wow. Yeah, this is so, so wise. And this is a great segue because I, I wanna ask you to share about the work that you do, on helping, supporting physicians, who, who are, who have loved ones that are facing serious illness or the end of life. And I'd love for you to share that service, and you did that for me.

 just, informally and, and I just so appreciated that and, and I was so thrilled to hear that this is actually something that you were moving towards, doing, offering it in a, a formal fashion.

Dr. Chiaramonte, Guest: Yeah, thanks. I do offer individual guidance and then also some educational things like how to talk to your loved one about. Etcetera, because I think there's really two components that are important when you're going through something like this. Some of the things that come up when you have a loved one with a serious illness who might be dying or even a, an older parent, and you're not sure, do I move in with them?

Do they have to go to a facility, but they won't go, how do I handle it? some of the information is the same for everybody. So knowing like how do you talk to your loved one about they can't drive anymore? Or how do you talk to your loved one about funeral arrangements? Those sorts of things I think are important.

And, so I'll have educational resources for that, but then there's also a component that is just human and support. And here I am, I'm in this situation and what should I do? And I think it's really hard to do it alone and to have somebody who's knowledgeable about. Not only the physical process of your loved one, but also what it's like to be a physician who is also a loved one, but is also a physician, but is also a loved one.

 I think it's just helpful to have a guide.

Dr. Gray, Host: Mm, absolutely. Absolutely. I so appreciated your guidance. what struck me was, cuz I, know that this is the field that you work in and in palliative and hospice medicine. but what struck me is, when, when we were chatting and you were so generous to, offer to help me when, when, when you learned that I was facing this, that it's also, you know, abouthelping, the, the one who's not the patient, right?

Like the, the loved one who's, supporting the patient, helping them process because like you said, it, it really sets the tone of, the whole, all, all the things that will happen is, how you show up into the, into this difficult situation.

Dr. Chiaramonte, Guest: A hundred percent. And actually in, in palliative care, the unit of care is the patient and the family, which is very different. It's very different than most of medicine where the unit of care is the patient period. And then there's a family who may or may not be annoying, but in palliative care, the unit of care is the patient and the family.

Because when you're talking about wellbeing, you can't separate the patient from a family and that's, our whole focus is wellbeing. And so. that's part of why I wanna educate physicians. So the other part of what I do is educating physicians about this process. Cause it's not rocket science, sometimes I'll have people say, oh, you're just so naturally good at this no there's skills, actually like anybody could learn to be like this, but we don't learn it.

And that's why I wanna teach physicians to practice in this way. It's a skill set. It's not that hard. Like it's not like learning surgery or anything. It's not that hard, but it's really important in terms of human being wellbeing. And of course we all go into medicine cuz we wanna help people. We don't go into medicine thinking I'm not gonna care how that person feels and what you learn. When you have a loved one who has an illness or you yourself has an illness, is it's a little bit, it's some not a little it's partly about the disease, but a lot of it is about the human, the person and the family and the coping. And we can't treat the disease. And then just by the way, throw a little something at the coping.

it's equally important. We need people to treat the disease. God bless them, but we also need physicians who have skills at treating the coping. And I think all of us should have those skills to one degree or another. Not everyone's a palliative care doctor, but everybody should have a big toolbox where they're really comfortable managing symptoms, physically, emotionally, and, and family symptoms physically and emotionally, so that the family unit is as well as it possibly can be. Regardless of what's happening with the disease.

Dr. Gray, Host: Yeah, that's, that's wonderful. tell us more about the, the, integrative palliative Institute, if, so, if the physicians are listening and they're like, I never thought about, you know, learning more about that. what do you have, for them?

What kind of resources do you offer them?

Dr. Chiaramonte, Guest: Yeah. So I started the Institute for integrative palliative medicine, and the goal is to train physicians, to practice this whole person care, using all the tools that work. So medication tools, but also these complimentary tools and counseling tools like we've been talking about. And so, I have some free information things on my website that people can download.

And then also educational courses on integrated pain management, adding integrated medicine to your practice, adding integrated medicine to your oncology practice. and then eventually, hopefully within a year or so, I will have a year long. program to get all the skills that I have, really, what I wanna do is just replicate myself so that there's doctors all around who are having these same conversations.

And so people can find me@mywebsiteisintegrativepalliative.com. Integrative palliative.com. Palliative has two LS, and I have a podcast that is the integrative palliative podcast, which you can find in all the place. You find podcasts, it's focused on physicians, and it's a way to learn a lot of these skills, for free.

So I would really recommend people come listen to the podcast and share it with any other physicians that you know, and then we do have a Facebook group. I'm trying to gather people together who are interested and that's the integrative palliative medicine interest group on Facebook. And you can just find me on Facebook if you can't find that, just find me on Facebook and send me message and I'll send it to you because I really want for the, for the.

The physicians who want to share this kind of whole person wellbeing with their patients. I just wanna teach 'em how to do it.

Dr. Gray, Host: Hmm. Oh, I love it. And I'll make sure to put all the information in the show notes as well. And I'm just so grateful to have one, you know, met you you know, I love the conversations that we had, there's, there's gonna be like a whole month of, content that I'm gonna have my on my podcast, with, just chatting with you.

And, this has just been so special. and I, I hope, the physicians who are listening, you if you're interested or if you're you, you're going through, a similar journey with a loved one, to, to reach out to Dr. Dalia, because she just has so many, so much wisdom. And just so much to offer to help help you live richer lives, personally and professionally.

Dr. Chiaramonte, Guest: Thank you so much for having me this whole conversation just fills up my heart. It's really special. I think it's, I don't know it's healing for all of us, just even to talk about these things.

Dr. Gray, Host: Mm. Yeah, absolutely.