Transcription:
Ways to Support a Loved One Who Has a Serious Medical Condition

Michael Carrese: It's a tough moment that many of us have experienced already or almost certainly will at some point. Someone you love receives a serious diagnosis and begins the journey to deal with all of the ramifications. Well, today we're going to talk about how you can help them on that journey with Dr. Robin Schoenthaler, a Radiation Oncologist with the Mass General Department of Radiation Oncology at Emerson Hospital. This is Health Works Here, the podcast from Emerson Hospital. I'm Michael Carrese and Dr. Schoenthaler you deal with patients and families every day who are managing serious illnesses. What's the first step a loved one should take, who wants to be supportive when there's been a new diagnosis?

Dr. Schoenthaler: I think the most important thing is to be present and to follow the new patients lead. I think listening is a vastly underrated and greatly needed skill in these settings and listening to the new patient's reaction approach and general philosophy when they're first diagnosed will give you a lot of information about how you can best serve them.

Host: So give me some examples of how you've seen patients react and therefore how people should pick up the cues from that.

Dr. Schoenthaler: Some patients are big information gatherers and so they may need their friends and loved ones to go with them to doctor's appointments, and take notes, and help them process what they're told. Some people just want emotional support. They just want to know that they can call them after their doctor's appointments and chat with them. Some people in this day and age want everything to become immediately organized. They want to know that there's a meal train available to them. They want to know that there's people that will help them with rides, and so people when they're freshly diagnosed, especially with something like cancer is something that's going to be a chronic issue with a number of appointments and needs over an immediate near future time. May need somebody to help with them with that. But mostly what people need is just to know that they can depend on their friends and their loved ones.

Host: Right. And people do have this natural, I think, concern about what you say and you know, do you bring it up? Do you talk about it or is it, or shouldn't you, I mean, what's your advice on that?

Dr. Schoenthaler: Yeah. For some people it's very much the elephant in the room. It's uncomfortable not knowing whether you should bring it up. The reality is it's the elephant in the room, and whether your uncomfortable or are afraid that you're going to make the new patient uncomfortable. The reality is that this is all that the patient is thinking about at this particular point in time. And I think that you can either ask directly, how's it going with your doctors? Or you can say how's your week been, and see where the newly diagnosed person takes you. I think the main thing is following their lead and having it be about them. This is not a time to bring up your theories about why this happened or why this happened to them or why this is happening in society. It's definitely not a time to bring up crazy harebrained cures that they've read about. It's a time to listen and a time to help figure out what exactly it is that will best serve the person going through all this.

Host: Yeah, that's great advice. You really sort of have to check your own impulses because you were talking about how the patient may be somebody who likes lots of information or maybe not. But if you're somebody who loves to get on Google and check everything out and you overwhelm them with information, that's not going to help them necessarily.

Dr. Schoenthaler: Right. And also, particularly in the early days of something like a complicated cancer diagnosis, the internet is really not necessarily the best source of information, the internet can be a great source of information after the diagnosis is settled and when treatments are being contemplated. But in the early days, it's such a broad stroke to type in, you know, breast cancer and then, you know, just get this tsunami of information, 98% of which isn't relevant. So I encourage people to in general to hold off on the information gathering until you know exactly what you're dealing with. And hold off on the information gathering for symptoms in particular.

Host: Right. So with radiation oncology patients in particular, I'm thinking of the logistics there because that's a lot of appointments or can be right over a course of weeks. So you can see how arranging for rides would be a really helpful thing.

Dr. Schoenthaler: Yeah, there's a number of logistical things that people can do to help anybody with a new diagnosis. But certainly with cancer and certainly with cancer that involves lots of appointments. So surgery is obviously, it's a big deal. Family flies in, you know, people tend to be around for surgery cause it's a one off and it's, you know exactly what the needs are, are going to be within, you know, there's a pre-op and op and a post-op period that's easily addressed. With chemo, it's more episodic. It can be weekly or every two to three weeks or monthly. That involves rides and long periods in an infusion room or occasionally in the hospital. But radiation, as you mentioned is daily, it's Monday through Friday and so rides and geography really matter. It's a short appointment but it's when you have, I think the average course in the United States is six weeks is, so that's about 30 treatments. That can be a huge help to have somebody manage an Excel spreadsheet or there's a number of commercial websites that help organize things like that, that help organize rides that help organize meals.

I have found that there's a number of tricks to make that work extremely effectively. And the first one is to have somebody besides the patient organize it. And that can be done on the websites such as caringbridge.org or there's a great one called lotsofhelpinghands.com, people sign up to bring meals in. The family says, you know, what their allergies are and that sort of thing. And what I found is the most helpful is several things. One is to have an official sign up to have a time during which the meals are dropped off, but they're dropped off. You leave a cooler in front of your house. You don't make an appointment with this poor patient who's going through whatever they're going through. You don't want to have it be a social obligation. You want to have it be a drop off.

Host: Right. Well cause you could interrupt a nap or something else.

Dr. Schoenthaler: Yeah. Or you could just catch somebody at a bad physical, logistical or emotional time and you just don't want to add to the burden at all. That's the number one thing you don't want to add to a person's burden. So by having a cooler out front on the steps or on the porch or wherever, and having people drop things off in disposable containers, this is not the time to be saving the earth. I must say. It's time to bring things in Ziploc bags and old Tupperware containers or old Chinese takeout. Anything so that you, the patient doesn't have to be responsible for returning, you know, aunt Mary Beth prized Corning Ware that she got for her wedding in the 50s right? You want this to be easy so you just bring the food in disposable containers, drop them off in the cooler, don't ring the doorbell and don't leave the family responsible for getting this stuff back. I also recommend only really three, maybe four meals a week. You'll still have food coming out of your ears in your freezer because nobody makes a small lasagna. And I also recommend asking specifically for low salt, and that way you only get so many portions of, you know, Chinese fried rice and Pad Thai that are delivered to you by the moms that are, that are too busy to cook. So those things can really help people. And also don't forget the kids, you know, the kids may not want to eat chicken and rice with, you know, some exotic Curry, but they may well be served by making sure that they've got plenty of macaroni and cheese or whatever's there fav.

Host: That's great advice. And this is the kind of very practical stuff that might never occur to you unless you'd been in the situation. So, talk about supporting the caregiver closest to the patient because they obviously take on a huge burden in this kind of situation.

Dr. Schoenthaler: You know, I think it's actually the same. It's the same guidelines. It's, it's about them. It's not about you. You, you definitely want to let them know that you're there. You're there to listen. You're there to offer respite care. Offering respite care is a huge thing, you know, and in general with both the patient and caregivers having advice, be very specific. It doesn't do anybody any good to say, call me if you need some help. What you want to say instead is, I'm going to Costco. Do you want me to pick something up or better yet I'm at Costco. What would you like? Or can I run some errands for you today? Or can I come and sit with the patient for between, you know, two and five next week. Really very specific offers of logistical assistance and then always the ear that's ready to listen without judgment, without inserting your own story, without having it become about you. Having it just be purely about supporting them and acknowledge, acknowledging the difficulties, and the difficult emotions that may be coming out as a result of being a full time caregiver.

Host: Emotional support. We touched on it at the beginning, but talk a little bit more about that. What kinds of things really do help patients dealing with a serious diagnosis emotionally?

Dr. Schoenthaler: Virtually every patient I've ever had has talked about people who dropped them, people who for whatever reasons, could not be with them during this time of need. Now sometimes that's because a person that you thought was a really good friend is not a very good friend or, not a very emotionally mature person and their own fears, error can't, they just can't. They can't get it out of their own way. Sometimes it's because they've gone through this before themselves and maybe recently, maybe not, and they, they just can't deal with it right now. So, and sometimes a person's logistics are so complex that they look like they're disappearing, but they're not. They're actually just dealing with their own, you know, job stress or family breakup or whatever. But it is incredible how universal it is to have the experience that friends have left. You have abandoned you in your time of need. So it sounds really simple for me to say, just be emotionally present with your friends. Just listen to them. Just let them know that you're not going to disappear. But it's in fact not universal. So the bottom line is, the best thing that you can do to be emotionally supportive is to be there and to be listening and to be nonjudgmental and have it not, I keep saying this, but have it not be about you.

Host: As Woody Allen says, 98% of life is showing up, right?

Dr. Schoenthaler: Yeah. There you go. Exactly. And again with, you know, emotional support can be logistical. I had a terrible thing happen in my life at one point. And a friend of mine, I mean, she wasn't even that good of a friend, but every single morning during the first 10 days after this terrible thing, every single morning, she called and said, can I run an errand for you? I'll never forget this moment. I mean, it was so really, it was all about the logistics on the surface. But the emotional [inaudible] that it gave me was just so intense and so incredibly helpful. And like I said, I'll literally never forget her.

Host: And it didn't take much really.

Dr. Schoenthaler: You know, the dry cleaners, prescriptions, prescriptions at Walgreens, you know, I mean, it's stuff that we're doing anyway.

Host: Yeah. Right, right. So let's shift for a minute to writing. You're a prolific writer. You've appeared in the Boston Globe, other mainstream media. And I'm just wondering if you want to talk a little bit about, you know, dealing with cancer, as you say, it's an incredible experience and full of so many different emotions and reveals so much about humanity. I imagine it's inspired some of your writing, which by the way, folks you can read @drrobin.org but talk about cancer and writing a little bit.

Dr. Schoenthaler: For me, it's evolved over time. When I was a younger doctor, it was more about catharsis. You know, you do see incredibly terrible, sad, tragic parts of the cycle of life in our humanness. And I think to be able to process that, everybody needs some kind of an outlet. I mean, it's not normal to, you know, most of us don't go to work and deal with people that are not going to see next Christmas. I mean, that's just not normal for most people, but that's what we do all day. And I wanted to be able to do it for a long time. So, I found my outlet, which turned out to be writing. So initially it was cathartic and helped me process this, this occupation and this reality that, you know, you're in your early thirties, and you're learning about the inevitability of our mortality, which most of us, you know, try to studiously ignore during our youth at least.

And then as I grew older, it was more about the incredible lessons that patients teach me, the nobility and the grace that I get to see at work. My recognition that this is part of, you know, as I incurred losses, seeing other losses as a part of the cycle of life. And that's different than approaching it from a scientific standpoint or even a psychological standpoint. It's more universe ish. And then I would say the last few years in which I've also moved into storytelling about, as, you know, live telling us stories where I, I sometimes tell about clinic experiences with my patients is about teaching in China and part some of the lessons that I've learned. So it's worked for me in many wonderful ways. And I'm very grateful to my patients for allowing me to learn from them.

Host: Well, that's a wonderful note to end on. I want to thank my guest, Dr. Robin Schoenthaler. She's a Radiation Oncologist with the Mass General Department of Radiation Oncology at Emerson Hospital. For more information, you can call (978) 287-3290 or visit Emersondocs.org. If you found this podcast helpful, please share it on your social channels or check out the full podcast library for additional topics that may be interesting. This is Health Works Here, the podcast from Emerson Hospital. Thanks for listening.