Janet Abrahm, MD, Debunks Myths About Palliative Care

Dr. Janet Abrahm, a distinguished professor of medicine at Harvard Medical School and an expert in palliative care at the Dana Farber Cancer Institute, sits down with Tina and Leah to discuss palliative or supportive care. Palliative does NOT mean "end-of-life" care! This misconception is just one myth dispelled during their conversation. Dr. Abrahm clarifies other misconceptions around palliative care, emphasizing its role from cancer diagnosis through treatment. Did you know that palliative care may help you stay on track when receiving curative treatment? Dr. Abrahm also discusses integrating non-pharmacologic pain management techniques, the psychological aspects of cancer treatment, and the importance of effective communication between oncologists and patients. Join Tina and Leah for this enlightening discussion about palliative care. (Hint: supportive care may be a more accurate descriptor.)

Links we mentioned and more about Dr. Abrahm:
Dr. Abrahm's website
Announcement of her prestigious award from the American Society of Clinical Oncology (2024)
Her book, Comprehensive Guide to Supportive and Palliative Care for Patients with Cancer, 4th ed (2022)

Other resources that were mentioned:
Handbook for Mortals: Guidance for People Facing Serious Illness
Living with Cancer: A Step-by-Step Guide for Coping Medically and Emotionally
The American Society of Clinical Hypnosis

Chapters

• 0:48 We are community supported! Please join us!
• 1:30 Introducing Dr. Janet Abram
• 2:33 Understanding Palliative and Supportive Care
• 4:05 Clarifying Misconceptions
• 10:03 Palliative Care During Curative Treatment
• 13:10 Supportive Care to Live Better Today
• 15:09 Integrative Approaches in Palliative Care
• 18:25 Non Drug Pain Management Techniques
• 26:30 Resources - Websites, etc.
• 30:24 Challenges in Oncologist-Patient Communication
• 38:40 Addressing Clinician Burnout and Grief
• 44:41 When Should Patients Seek Palliative Care?
• 46:26 Wrap Up and some last minute resources...

Transcript

Janet Abrahm: 0:00

I remember I used to have to do bone marrow tests, you know, I was a hematologist, so I used to have to do that. And I would use hypnosis and the fellows would say they were smelling cider donuts and hearing the crackling of the leaves and the light coming through it every time they did a from then on, because We would take a walk in the woods in the fall, you know,

Tina: 0:21

I'm Dr Tina Kaczor

Leah: 0:22

and I'm Dr Leah Sherman

Tina: 0:23

And we're two naturopathic doctors who practice integrative cancer care

Leah: 0:27

But we're not your doctors

Tina: 0:29

This is for education entertainment and informational purposes only

Leah: 0:33

do not apply any of this information without first speaking to your doctor

Tina: 0:38

The views and opinions expressed on this podcast by the hosts and their guests are solely their own

Leah: 0:44

Welcome to the cancer pod Hi, this is Leah from the Cancer Pod. We are so grateful to have you all, our listeners, as the backbone of the podcast. The Cancer Pod is listener supported, which means your engagement is crucial to help this podcast thrive. If you love what we do, please share our episodes with your family, friends, and followers. Spread the word so we can reach and help more people. Want to go the extra mile? Buy us a coffee. Head over to our website to learn more or check out the link on our Instagram. Explore the affiliates on our Cancer Pod website. These are trusted resources we recommend. When you make a purchase through the link on our site, we may earn a commission at no additional cost to you. It's a win win. Now, let's get to today's episode. Tina and I had the opportunity to speak with Dr. Janet Abram, an internationally renowned expert in palliative and supportive care. Dr. Abram is an institute physician at the Dana Farber Cancer Institute and a distinguished professor of medicine at Harvard Medical School. She combines her background as a former practicing oncologist with her passion for supportive care. She's the author of Comprehensive Guide to Supportive and Palliative Care for Patients with Cancer, the definitive resource for physicians about cancer support, palliative care, and pain management. Most recently, Dr. Abram was awarded the prestigious Walther Cancer Foundation Award from the American Society of Clinical Oncology, recognizing her significant contributions to palliative and supportive oncology care. You We were so thrilled to have her on the podcast to share insights and expertise. welcome Dr. Abram.

Janet Abrahm: 2:25

Thank you.

Tina: 2:27

Yes, thank you so much for taking some time out of your schedule to come talk to us and our audience about palliative care.

Janet Abrahm: 2:33

Very happy to be here. Nowadays, um, some of the oncology practices are calling it supportive care, which is fine with me too. I did oncology for about 20 years. And so I have a real sense of, of the supportive, if you will, and palliative needs. And if people Conflate palliative with end of life and hospice. We don't want that. So if supportive is more helpful to understand that we offer services from diagnosis of a serious illness like cancer on, that terminology is fine with me too.

Leah: 3:06

I think that's the most important thing is that patients when they hear palliative, they think end of life. And so, yeah, I mean, if, if there are other ways that you could, define for us what palliative care Slash supportive care entails,

Janet Abrahm: 3:25

Sure. Sure. I think the best way to explain it is that. We are there to partner with, and I'll say the oncologist, because that's, that's the group I know the best. We're there to partner with the oncologist to make, the patient and family's quality of life the best that it can be. Uh, some people cause an extra layer of support, but when I introduce myself to a patient or family, I say, Your team has asked me to see you because you have problems, I'm told, with some of your symptoms or you have some questions you wanted to talk about. How can I help? So I don't go into a big description of what palliative care is. I just try to be what it is.

Tina: 4:05

Yeah, it's interesting that we start with this because I can tell you, I'm overseeing some coursework in integrative oncology right now, and it's a fellowship for people who are already professionals, and we have a palliative care segment, and I would say at least 40%, 4 out of 10 of the, of the, Fellows. Conflated hospice care and palliative care. And I know that that's true for the public as well, but I was a little surprised that it was also true for professionals. So, I think this is important, because the word palliative does sound a little bit, it is conflated with hospice more often than not, and people are reticent. So, the fact that you came up right out of the gates telling us there's another term called supportive care, I like that. I like that.

Janet Abrahm: 4:46

Dr. Pereira did some studies down in MD Anderson and found that if he called his team supportive in palliative care, then he got earlier referrals. And so our, our new book. It's called Comprehensive Supportive and Palliative Care for Patients with Cancer, a guide, you

Tina: 5:03

Yeah.

Janet Abrahm: 5:04

It's hard, there's, supportive can also just mean antibiotics and transfusions and what we're doing is so much broader than that.

Tina: 5:14

is it fair to say that is addressing symptoms of people who are not looking at a curative treatment? Would that be accurate?

Janet Abrahm: 5:22

So again, I would say that palliative care can be life saving and can enable a cure. So palliative care is there for the symptoms of people who are undergoing cancer treatment. Or not, but undergoing curative or palliative, if you will, cancer treatments. And we're also there for the communication challenges because often a patient or family member doesn't want to question the oncologist. They don't want to show lack of faith. They want to be grateful. And yet as The course continues. Sometimes there are turnoffs and you're not sure what the risk benefit or let's say the burden benefit of a given treatment would be for you if your disease is more far advanced. So we're often there as the people you can talk to about this and we can help you sort out your goals. Uh, what your hopes are, what your worries are, and then match those because we'll ask the oncologist, what are your hopes for this treatment? What are your worries for this treatment? So we can match the hopes and worries of the two parties, in a very supportive and, and respectful way to say, gee, I, I hear what you're saying that you hope this treatment will do. The oncologist isn't really sure that it will do that, but it could do this. Would that be okay? So in a way, we're translators, maybe, interpreters of The medical ease, uh, you, you often have only 15 minutes or so with your oncologist and you want to talk about the treatment. You don't always want to talk about your symptom or your worries, because maybe you want to get an experimental treatment. And if you show that you're not with it and for it, you'll kind of fall down on a list a little bit of the people who get the experimental treatment. That's. The projection of the patients, that's not how oncologists think, but my, even my own patients used to think that way, and sometimes the, um, the doctors who were caring for my patient in the hospital would have to tell me that the patient was done, and I would say, but they never told me that. And they said, Oh, they wouldn't want to disappoint you. You have tried so hard and they're so grateful to you. They would never want to let you down. Now, I can't believe I'm the only oncologist that's happening to, you know, so I would say it's not just for people who are not going to be cured of their cancer. We have enabled people to be cured of their cancer by dealing with their symptoms from the treatment. And the cancer, so they could get through curative treatments, those who have that available to them. I hope that's helpful.

Tina: 7:52

Yeah, what you're describing is almost like a navigator, or what we dream a navigator would be, which is to help bridge that, expanse of both options and communication and be an impartial party of sorts to say, okay, let's see where you're at and make sure that the patient as an individual is served.

Janet Abrahm: 8:14

That's what we're really good at. Yeah, we're, we're trying to really explore with patients and families what they're hoping for, and then, as I often say, and what else, and what else, and what else. Because everybody has layers of what they're hoping for in cancer treatment, right? And so we try to unpack that so that we can help the patient have a realistic, as much as they can tolerate, a realistic understanding of what's going to be entailed. And, I think we really do try to partner with the oncology team because we have more time to unwrap all these things, to be culturally sensitive, to explore As I said, things that the family and patient might not want to bother, if you will, the oncologist with in the time they have together.

Leah: 9:01

I think we've all had the experience where there are patients. And perhaps it is due to cultural differences where they will, they will say to the oncologist what they think the oncologist wants. To hear, and I know from my own experience with my mother who went through palliative care, um, she was able to speak with the palliative care doctor on a different level,

Janet Abrahm: 9:25

Oh, good. I'm so

Leah: 9:27

because she had such, she had such a, um, I don't know. I mean, she loved her oncologist, but sitting in appointments with her, she wasn't quite, you know, As forthcoming as I knew, I'm the one answering her questions, you know, like, that's not true. And so I feel like she had, she had a much, uh, different relationship with her palliative care doctor. And yeah, that whole experience was, it was so important. They helped to clarify different aspects of her treatment and goals, like you were saying, it really, um, Yeah. I have, I have a lot of respect for palliative care.

Janet Abrahm: 10:02

Thank you.

Tina: 10:03

Well, and saying that palliative care is appropriate, even for people who are looking to be cured is actually news to me. I honestly always think of palliative care as living with a condition comfortably and with, you know, no pain and no symptoms, right? Like symptom control while you have an underlying condition, whatever that is, whether it's cancer or a heart condition or whatever, but palliation of symptoms while you live out your life rather than Being on a curative course, where possibly you won't be having that condition anymore in the future. I mean, that's actually a twist for me because I have always thought of palliative care as symptom management.

Janet Abrahm: 10:41

that because a lot of the palliative care came up from the end of life aspect. When we first started our field, which was only less than 20 years ago, 2006, we became a subspecialty of internal medicine. At that point, very few oncologists were actually part of that initial core of people who started palliative care. But those of us who were oncologists understood from having tried to get our patients through treatments, which were a lot harder in those days than some of the treatments are now, they couldn't get through them without really, really good symptom management, but also an understanding of the psychological toll, you know, the trauma that medical treatment induces. in everybody, the patients, families. So we have an understanding of the trauma they're going through. We have an understanding of the psychological and spiritual and existential resources they need to get through it. And there are many cancers that are curable. But the road there is not easy, so having a partner right up front can make all the difference, at least in my clinical experience. Of course, by far the most cancer patients are on a palliative, trajectory. Nowadays that can mean years and years and years of, Palliation, especially for breast cancer patients, and now other patients, and the idea of cancer being like a chronic disease, like heart failure, as you said, or lung disease or something. For many cancers, I think that's true. And so you need a partner to help you navigate that too. But the very beginning of, of a curative cancer treatment, maybe we should have the metaphor of, of the guide that gets you through the rapids, you know, in the beginning of that, of the, uh, of the boat.

Leah: 12:31

Sure.

Janet Abrahm: 12:32

what we're there for is, is we know where all the rocks are, you know, and we know where the calm place is going to be, and we can encourage you to stick it out with us to get there, you know, I like kind of like white river rafting is a metaphor for some of the beginning of the oncology treatments, even if they're just emotionally and spiritually and existentially very rocky. You know, because people blame themselves unnecessarily. They look to what they did to have this happen to them. And so all of those questions come in the beginning, right? Not just the, not just the end. So I'm glad that we could clarify, that practice.

Leah: 13:10

I think that the goal setting aspect is also kind of unusual and in some ways it's delightful. I mean, our palliative care doctor helped patients get married,

Janet Abrahm: 13:24

Uh huh.

Leah: 13:24

patients go on a, on a vacation or something, I mean, or had them create a collage or something of like all their grandchildren. I mean, there are all of these. different aspects that were beyond just the, the symptom, you know, the physical symptom management part. And so, um, yeah, that's, that's, that's kind of incredible that there is someone there who's listening.

Janet Abrahm: 13:48

and as you know, being naturopath, symptom management is the Maslow's hierarchy is the bottom of that is the key. If you're in severe pain, if you're severely depressed, if you can't breathe, you can't do any of those important things. So all of us have to be very skilled symptom management, but that's for me, though. That's how I started. That's the bottom layer. That's the, that's That has to be done, but you usually can't do that without addressing the other things too. But you do have to be pretty good at using the medications and other techniques, the ones that you employ, to get people at least to a place where their symptoms, what I say is they're not here anymore. Maybe they're down here. You know they're there, but you can function again. Get people back to what their level of function is to start with. And then we can start to do the other things. it's very important. All palliative care doctors. And maybe that's why you think of them that way, because we do do magic sometimes with symptoms. Uh, nurses certainly have told us that we do. Um, they weren't really happy. They didn't know quite what we did when we started in 2001 at Dana Farber in the Brigham. And then they saw some of the things we could do and they're like, Whoa, okay. Now we, now we see we can get the person back. But once you have that person back, that's just part one.

Tina: 15:08

Yeah, yeah, as you're talking I'm thinking about how much this lends itself to integrative medicine and integrative protocols I mean medications absolutely pain management and other symptom management and it's a quality of life. We're talking about so there's a lot of things whether it's through nutrition or acupuncture or movement Uh, exercise, all sorts of ways of helping people optimize their health, no matter where they are along that cancer continuum.

Janet Abrahm: 15:35

lately exercise and nutrition, exercise especially has been shown to be life prolonging. In many cancer patients and, and the amount of exercise that we can induce them to do, even with some advanced, more advanced disease, of course, acupuncture, of course, massage, um, hypnosis, I'm trained in hypnosis and, and I think it just informs my communication with patients and families and doctors. and nurses, everybody, because once you're, as you know, once you're trained in hypnosis, the world is a metaphor, sort of

Tina: 16:10

Is that right? No, I don't know that.

Janet Abrahm: 16:13

all hypnosis. Have you been trained in hypnosis? Is it part of your

Tina: 16:17

No.

Janet Abrahm: 16:18

Oh, I'm sorry, Leah. No. So I was trained in hypnosis back in the day when we had fewer medications. And, I learned there's an American society of clinical hypnosis, Only lets clinicians into the courses. You have to have a clinical degree like you guys do, or a nurse or a doctor. And I learned all about the power of my voice and metaphors and, the ability to take someone where they'd really rather be when we didn't have good meds for nausea and vomiting or pain. Hypnosis is very powerful for deliveries that can shorten the first stage of labor, for example. It's a very, very wonderful technique for symptom management, but also for ego strengthening. I mean, you do what you can do. So psychiatrists do it with psychiatry and OB do it with OB. I do it with my, my cancer patients. But I found it to be very rewarding and it really connects you very closely with your patients when you're doing this. You might've heard of guided imagery. Which is close to hypnosis, but, but not the same thing. But if somebody is in trance, taking them on that guided imagery. is more powerful. I mean, you bring in all the senses and And I remember I used to have to do bone marrow tests, you know, I was a hematologist, so I used to have to do that. And I would use hypnosis and the fellows would say they were smelling cider donuts and hearing the crackling of the leaves and the light coming through it every time they did a from then on, because We would take a walk in the woods in the fall, you know, because that's where the patients one time I went, I started to go to the beach and the patient said, no, no, I want to go for a walk in the woods. I know what you're doing. So off we went for a walk in the woods and he was, he was distracted and the fellow was calm. It's a very wonderful technique that I would very much encourage you to add to your practice. If, if you find that interesting.

Leah: 18:16

Oh, absolutely. Absolutely.

Tina: 18:18

Yeah. I do know some of my colleagues do use it, so I'm gonna have to ask them where they got their training now.

Janet Abrahm: 18:23

Sure.

Leah: 18:25

Are there other, more integrative or, I guess, non pharmacologic, pain management tools that you employ with your patients?

Janet Abrahm: 18:34

Well, now that we have, we have a more robust Zakem center, which is our integrative therapy group at, at Dana Farber. I recommend acupuncture. I've, I've read the data and the NCCN recommendations and the things that are, are most recommended. So definitely. definitely yoga, uh, massage, acupuncture, especially electro acupuncture, which I've had myself for a bad back, which has been life saving, I don't know enough about Qi Gong to recommend it or not, but they do it at the Zakem Center. Exercise. I mean, I consider education and reassurance a non pharmacologic pain regimen. I mean, I had an aunt had breast cancer and had to get a bone scan to see if it was metastasized. She had arthritis everywhere. So I told her, Your bone scan is going to light up like a Christmas tree, but don't worry about that. They're going to want to get x rays of everything, but it's not cancer, it's your arthritis. Yes. To me, that's education reassurance prevented an awful lot of pain. what other, I mean, non pharmacologic, all the counseling techniques, all the meditation techniques, cognitive behavior therapy for insomnia, all of those in, in my book, there's a very large chapter on the non pharmacologic techniques for pain. I couldn't treat a patient in pain without, absolutely not. What, which ones do you find most useful? For I'm curious

Leah: 20:03

Depending on the patient, I think, I mean, I think exercise is huge. Exercise is the thing where, I mean, I think about my patients who are on aromatase inhibitors and I talk to them about, you know, well, what makes, what makes it better? And they're like, well, movement makes it better. So then I encourage exercise and they're like, well, I can't exercise, I'm in too much pain.

Janet Abrahm: 20:23

Oh,

Leah: 20:23

it's, it's that dance, but, um, I have referred patients to an exercise program at one of the cancer centers where I was working and the patients who stuck with it were just they were amazed because it was it was a it was guided exercise It was designed for them,

Janet Abrahm: 20:41

Yeah. Yeah. And physical therapy, occupational therapy, art therapy, music therapy. I may have left something out, but everything that engages the mind and the spirit, which are all part of the body, everything is part of everything. I mean, Eric Cassell was my mentor and friend. He's passed now, but he used to say suffering is suffering is suffering. You don't. parse it out. The body doesn't parse it out. And I feel like whatever the, I tried to find out what the person was doing before they got sick, you know, and what was helpful to them. I'm wondering whether the virtual reality, extended reality experiences will be helpful. I've seen as it can be wonderful for pain, virtual reality for changing dressings and burn patients. For example, you don't need any medication with virtual reality in the studies that have been done. and, and you can, with hypnosis, you can do eye surgery on kids, you can have them watch the TV or the video, I guess,

Tina: 21:37

Oh.

Janet Abrahm: 21:38

and they are in trance and you can adjust their strabismus I'm told. I'm not an expert. Because you want them to be awake and you want them to look forward. Um, but the virtual reality, I'm very intrigued by how that's working neurochemically to stop the parts of the brain that That register pain. It must be doing that. It's only the brain that registers pain. Everything has to get to the brain for you to feel pain. So something about the VR, right. Is, is stopping. Thank goodness. Those signals from the periphery. And I would love to know what that is. I would love to know.

Leah: 22:19

I have had patients At least one in particular who said they were very into doing the virtual reality exercise programs that there are and they wanted VR in the, in the infusion room

Janet Abrahm: 22:33

Yeah.

Leah: 22:34

take

Janet Abrahm: 22:35

Should be.

Leah: 22:35

Like exactly.

Janet Abrahm: 22:37

The holodeck, you know, the holodeck. That would be great. I mean, I would love that. And they're not that expensive anymore. So I think, you know, maybe the, the friends of every cancer center could donate VR sets to the infusion rooms. I think it'd be a, or for those poor patients, you know, who can't get out of bed, who get too sick from any illness, How wonderful to be, even though you're homebound, to be skiing or whatever, whatever you like to do. You know, I can't believe I've, I've been within five years. I can't believe we're not going to have that as just part of your glasses. You know, it's going to, Be less complicated like those Google glasses were.

Tina: 23:18

Yes. I have. I've actually seen ads for just that where you can, you can just envision that puts up a virtual board and you just put on these glasses and you can, well, they're, they're advertising it to do work, but I could see it used better to do something more pleasurable than looking at your computer screen. But yes, it kind of creates what looks like a projection wherever you're looking. Um, I was at a conference and there was a company looking at using virtual reality goggles in the infusion room. And it was specific to pancreatic cancer patients in their study. it was a passion project. The founder and CEO's parent had pancreatic cancer and as a person who was technology savvy and said, we need to get these people out of here. Like the infusion room, wasn't a great experience for the parent. And so. They were coupling it with breathing techniques

Janet Abrahm: 24:07

that's a good idea. Abdominal breathing, especially have them do abdominal breathing would be

Tina: 24:13

yeah, and it was really neat. Cause if you're looking at a beach and the waves are coming and going, and there's a moon coming up and you had to, you had through your breathing, you could kind of control the scenery and you, you had a goal, you know, um, I can't remember what's to keep the moon up or what it was, but it was something where like, oh, okay. And then afterwards they showed you how you're.

Janet Abrahm: 24:31

it would be, it would, it would time with the waves. I was thinking I would do it. So it would time with the waves that that would be my suggestion if I were doing it is to be able to sync your breathing with the in. That's what I do in hypnosis, the in and out of the waves, but abdominal breathing is so helpful and people have such bad, um, hard wiring of the side effects of, of being in those infusion rooms. I mean, it isn't so bad anymore, but I would be at the grocery store and people would throw up if they saw me.

Tina: 25:00

Oh,

Janet Abrahm: 25:01

Or, or at an airport and people just, the smells of the infusion room would be enough, but nowadays the treatments are so much better. The drug treatments are much, much better but they're still not fun. And the week after treatment isn't fun. So

Tina: 25:16

I think there's a little bit more cognizance of the setting for the infusion room to be a little nicer now. I feel like it was very, I mean, I, I did my residency in 2000, 2002, and it was very different. it was at CTCA, which they did a much better job than most,

Janet Abrahm: 25:30

Yeah, they were supposed to be the fanciest. the TV show, at least the ads, they looked elegant. CGCA, I thought, Whoa, this is like the Cadillac of oncology practices.

Leah: 25:42

Yeah, that's it was

Janet Abrahm: 25:46

What happened to It is, it still, is it still in practice?

Leah: 25:48

it's city of

Tina: 25:49

it's owned by City

Janet Abrahm: 25:50

No. Oh, Oh, wonderful. That's a wonderful place. Betty Farrell's there. She's a genius. Yeah.

Tina: 25:59

So yes, they, you are correct. It was actually wonderful because a lot of the services you're talking about In palliative care, it was all under one roof, which I think is becoming more and more common now, Dana Farber, like you mentioned, you know, you're either allying with integrative practitioners or you have them under your roof, but there's a little bit more patient centeredness around cancer care than there was 24 years ago.

Janet Abrahm: 26:20

yeah.

Tina: 26:21

So that's that's the right direction. I'm happy about that.

Janet Abrahm: 26:23

Yeah, me too. Um, I just was hoping I could mention the website just as a resource.

Leah: 26:28

Oh, Absolutely.

Janet Abrahm: 26:30

So after we, we wrote the book, this is the fourth edition. The first one was in 2000, which was called A Physician's Guide to Pain and Symptom Management in Cancer Patients. And it just showed how every edition shows me how much I've grown, which is wonderful. So this edition is, is called. A Comprehensive Guide to Supportive and Palliative Care for Patients with Cancer. And it has chapters by social workers about family dynamics and by chaplain, of course, and by psychiatrist, and there's lots of stories and lots of symptom management. But once we finished that, we thought, well, a lot of people don't read books. I mean, they're good to have on your desk, but. Or online, but we learned that 60% of community oncologists did not have a palliative care partner. Now, hospitals, over 300 beds, 95% of them have palliative care teams. But most people aren't in hospitals, thank goodness, right? I mean, most people are cared for outside a hospital. So I thought, I used to speak to community oncologists when we did our updates at Dana Farber about symptoms, but also about moral distress and communication, you know, how to break bad news and how to break really bad news and how to not feel terrible about it. And so we created this website, which is just my name, JanetAbrahm. com. You just have to get the H in there and you can find it. And what it has is, resources in symptom management and communication and end of life care, and then special topics like people who want miracles, LGBTQ issues, trans issues. We have interviews with people who are experts in all those fields. And then we also have papers and links to websites and things. And the goal is for, and we'll have a newsletter and the goal is for practicing oncologists to just stop by and see is, you know, is there something that they need to know how to manage better or do they want to email me? You know, do they want to connect with me or things like that? So the idea was to be a resource and we've just started we're just launching it now, really. and so, uh, we'll be very interested to see what, um, what people need, what questions they ask, what we haven't included that they need.

Leah: 28:49

it is geared towards clinicians.

Janet Abrahm: 28:51

yes, there's nothing on it that is wrong for patients and families, but the American Cancer Society has wonderful resources for patients and families, and they, in fact, just partnered with the American Society of Clinical Oncology, the doctors, so that for their messaging, American Cancer Society is is so good at messaging, you know, for patients and families or living beyond breast cancer. There's so many, it feels like community resources for patients and families, but fewer for the oncologists who need a little bit more expert training because most of them weren't trained in this in their fellowships. They, they don't really know how to do, like if somebody has really bad neuropathic pain, nerve pain from a cancer that's invading the nerves, they don't often know how to use the drug called methadone, which is really good for that kind of pain. And they would want a partner, even at Dana Farber, we often will see those patients to get them under better control so they can go on and get their treatment.

Tina: 29:52

hmm.

Janet Abrahm: 29:53

we thought it might be really useful to have. Have all that information in one place for them as a resource, especially the videos, the communication videos, like you were talking about, about, when a patient isn't doing so well, how to talk with them. Usually they don't get trained in that. Maybe one day now of oncology training. we get to teach them for a day. That doesn't seem like quite enough. So we made some videos of the same kind of thing so people could watch them and see examples of how to have that conversation without feeling like you failed the patient.

Leah: 30:23

sure.

Tina: 30:24

You know, it's, it's interesting because, you know, we're all clinicians. We've all worked with cancer patients and in our offices, I think this is true of all three of us, we get to see the patient kind of exhale and relax. Like you said at the beginning of this interview, like, you know, there's a difference between a medical oncologist and they're putting all their chips, they feel like all their chips are with that person. Right. And so they don't want to do the wrong thing and there's, they're a little bit like, I just want to do whatever they want and I don't want to disappoint them. And I feel like when they were with their naturopath or perhaps their palliative care team, they can relax and just be a little bit more real about everything. Um, so that's a privilege. It's a, it's a privilege. But in that setting, sometimes patients will gripe about the communication from their medical oncologist about the harshness or about how things were delivered or, and It's a challenge to both acknowledge and validate that they have a good point and try to explain the other side, right? I've had these conversations with medical oncologists my whole career. It's like, okay, so

Janet Abrahm: 31:25

hmm,

Tina: 31:25

you said this to the patient so I can understand their perspective better, right? Like, why, why are you going straight to hospice when the patient has two more treatments down the road? You know, and they don't want to think about hospice yet. But You know, there's this, like, burden on the medical oncologist to prepare the patient. Like, I, they, that's always been explained to me. They feel an obligation to be very honest and prepare the patient for whatever is to come. but I would argue a palliative care team is better at that. So this is, this, this is another reason that palliative care should be everywhere, is I feel like it shouldn't be the medical oncologist's job to do those things. It should be a it should be dedicated to someone else down the hall. So,

Janet Abrahm: 32:05

Oh, I can't, I can't totally agree with that, but I can give you some language

Tina: 32:10

No?

Janet Abrahm: 32:10

you'll accept. Which is that, I feel like patients really rely on that oncologist because they've taken them through so much. So, the language that we hope the oncologist will use is the hope and worry language. So, I really hope this treatment is going to work and I'm going to do everything, our team, your nurse practitioner, our social worker, our team is doing everything we can to get you through this treatment. I worry that there aren't an infinity of treatments left. Now, maybe something will come along. But I do worry. And some of those treatments are kind of hard to take. So it's okay with me if we talk a little bit about, kind of the what ifs. Now, what we always ask the oncologist to say is, is this a good time for you to do that? And the patient says, no, I just want to get through this treatment. Then you say, fine. But at least you heard your oncologist say, I hope and I worry.

Tina: 33:03

Mm.

Janet Abrahm: 33:03

just your palliative care doctor says that, it doesn't have quite the same authority.I don't t think.

Tina: 33:10

hmm. Mm hmm.

Janet Abrahm: 33:11

And then it'd be great if the oncologist gave me a heads up and said, I had the whole worry conversation today. Can you let me know how it landed? How she feels? Um, was it too much? Was it not enough? Cause you, you don't want the oncologist, you know, the oncologist feel failures. That's why they use that word fail the chemotherapy. Nobody fails chemotherapy. The chemotherapy failed the patient,

Tina: 33:35

Exactly.

Janet Abrahm: 33:36

but doctors use the fail word. And I think it's a counter transference. They feel that they failed. The patient and it's not a it's in here. It's not up here. If you ask them, they will say, Oh, no, I didn't. I did everything. But then in that last meeting, they recite all the things they did. So I know they're hurting. I know this feels terrible for them. So I'm a partner for the oncologist for that reason. And I think that, you know, their grief can lead them if they don't have a partner to what I call truth dump. You know, you don't want to do that. Because you haven't processed it. You don't, you've got some bad news back. It's so overwhelming. Usually it's junior people who do this. Trainees. They got the news back and they can't hold it so they dump it on the patient and family. That's not a good technique. And maybe your patients have had that happen to them. Sort of a truth dump where it was just unfiltered. It wasn't nuanced. So, so our training, we're lucky. We were able to train the oncologists in what vital talk. Have you heard of that communication training program?

Leah: 34:45

No.

Janet Abrahm: 34:46

called, it's called vital talk. Uh, my boss, James Tulsky, Dr. Tony back and, um, Bob Arnold started it about 20 years ago now. And there's wonderful training for regular doctors and also oncologists in all of these techniques. and there's an app that can remind you what the questions are. For the breaking bad news conversation, where after you break the bad news, I mean, there's rules for how to set it up, but then there's these wonderful nurse acronym, which is how you respond to the emotion. You name it or, you know, you say you understand or you respect it or, uh, the patient or, you're going to support them through it or exploring more. That's the nurse acronym. For me, it's always when I break bad news and I get an emotion back, it's always some form of grief. You know, the five things. So it'll be anger, denial, bargaining. Those are the things that people respond with when you give them bad news because they're in grief at some level. But anyway, the vital talk training can be done in a day by oncologists or by any clinicians. It's a wonderful communication training, I think, uh, Dr. Chelsky came to us in 2015. I was curious, so I got trained in it I did the more advanced training because I thought that was my responsibility. And I found it very helpful to have these phrases to use, like, um, for that patient of yours, maybe he could have said, we're in a different place now. That's a really gentle way of letting somebody know that, yeah, we can treat you, and we're in a different place now, maybe we should think about talking about code status, for example, right? You know, so, of course, we're going to treat you, we're going to do everything we can, but this cancer is so far advanced, it would be awful if, when you passed, We had to do that. So there's lots of very well honed phrases that are a good resource for the clinicians, who watch your podcast.

Tina: 36:45

Yeah, well, and I would say what vital talks is what you call that, right? That's the app

Janet Abrahm: 36:50

a, it's a program called vital talk. Yeah.

Tina: 36:55

encourage, I know some patients are like good riddance and they don't go back and help clinicians become better clinicians because they're too upset sometimes. But I would encourage patients who have the energy or their caregivers to say, you know, maybe suggest this to a doctor who wasn't very good at their communication because it's only through feedback that people get better. So very

Janet Abrahm: 37:14

I think that's great. You can say there's this new, new program that I'm sure wasn't around when you were first, you know, being trained. And I so appreciate everything you're doing for me. And,

Tina: 37:25

Yeah. that's great.

Janet Abrahm: 37:26

and that's the other thing instead of, but instead of, but we've been talked to use and, and I like that much better. Just like, instead of saying, I'm sorry, I say, I wish it were different because then I'm connected to you. I say I wish

Leah: 37:41

Mm

Janet Abrahm: 37:42

because I do. Yeah,

Tina: 37:45

Yeah, that may be a bit more accurate more than I'm sorry.

Janet Abrahm: 37:49

Yeah, it really is. But we weren't. You need to be taught to uh, just like, you know, we don't do procedures differently every time. Our communication is a really important medical, as you know, uh, medical intervention. The way we communicate can make all the difference. And so if somebody's figured out ways, That are really helpful, like, I think these things are really helpful, I use them over and over and over and they help me connect or maybe a better way of saying is they make manifest that I am connected. They don't get in the way or interfere with how much I care about a patient. They manifest how much I care about a patient in a very professional way. That's what I like about them.

Tina: 38:36

I think that's lovely and I think you you have also spoken about burnout among clinicians and being able to connect without being Completely burnt out on the emotional Aspect of being a physician for the for patients going through difficult times no matter what the condition. Um, That's a whole skill set too So what you're what I like what you're saying because I understand that you can be with the patient and connect with patient Because I think sometimes the harshness that comes across is just people self protecting

Janet Abrahm: 39:09

I would agree and I think the biggest problem which happened to me and of course happened to every oncologist is not having a place for your grief. Not having anybody to talk to about your grief. Feeling guilty that anybody else but you would have saved this patient. That's how doctors are trained. That it's us that are supposed to save everybody. So the unspoken curriculum as you're training is nobody talks about the people who died overnight. I did. I was, I said, your rounds are very different. You know, I want us to unpack any feelings you had about that person. I want to respect her. I want us to. Really talk about how we cared for her and, and how her passing was very peaceful thanks to us. I think most oncologists have written about this, do not have a place for their grief and it builds up and after a while you don't have any margin left for more grief, but you don't know it. It's just in here. You just don't want to go into those rooms and the patients can see it. They can tell, and they think they did something wrong, which is really hard, you know, to cause you to look like that. Yeah. You think you're doing such a good job of hiding your, you know, your, your sadness. But I think if there were more ability for oncologists to process their grief, in a structured way, we do that with a remembrance every week because we have so many people who pass in palliative care. But oncologists, I really feel could do it once a month with their staff. They could read something, a poem, or they could, have music, or something. And then you read the names of the people who passed, and you talk about them. It's a wonderful way of, you know, remember the anxiety closet, of emptying that anxiety closet. It's, you have to do that. And if there's no place for it, then I worry that what happened to your patient happens, because that person has no place to put that grief and those feelings. And so burnout manifests as anger, right? That's one of the, or depression, depression manifests as anger. Um, inappropriate anger, inappropriate pulling back, making rounds when the family's not there on purpose.

Leah: 41:14

Right.

Janet Abrahm: 41:15

There's all kinds of things that, that manifest, I think, as, as grief, and if we could do something about that, we could decrease burnout, and there's a lot on our website about grief. Moral distress.

Tina: 41:27

are they teaching this more in nursing and medical schools because I feel like it has to be done out of right out the gates In order to be managed over life.

Janet Abrahm: 41:34

Nursing school has always taught about moral distress. It's a little different because nursing moral distress is when you know something should be done and you're not the doctor and you can't order it. And you have to carry out

Leah: 41:46

Oh. Cool.

Janet Abrahm: 41:47

these horrible plans. So my, my introduction to moral distress was from my nursing colleagues who consulted me in their moral distress. To say so and so won't write a higher dose of morphine or, you know, the people where they see the suffering and the oncologist sees that they just make it through the rapids, they're going to be cured of their leukemia. So we have to support them and get the nurses there for 12 hours. the suffering. so I think they don't, I don't know how much if they, I don't know about the curricula anymore. I worry that too much of this kind of thing is in the first couple of years. And then the real thing they learn is when they start working with, residents and so forth on the wards. Mm hmm And what they learn there is what counts. So we're trying to induce, introduce communication training. We have to the first, second and third year residents at the Brigham are, we have a core curriculum, core communication curriculum in which we do role plays and really show them how to use this vital talk type of language. We, we teach them how to have the family meeting in the first year. And then we teach them how to have that things are not going so well in the second year. You know, and we, we kind of build on those, on those skills, but it is only one day for each of them, but it's pretty powerful because I've seen them use it. They must need it, but I have no idea in the country, uh, what the norm is. It would make people feel a lot better if they felt skilled in these areas. I know it, they would feel so much more empowered if they knew that they could say something that would be helpful.

Tina: 43:28

Well, yeah. It serves everybody. The and the patient. Hopefully your work goes on to influence you. The many, many more thousands of practitioners out there who, who will read your book or watch, get the app. So it's very commendable that you're getting that work out there making a big difference.

Janet Abrahm: 43:45

Well, it's, you know, it's a very rewarding profession and anything I can do to give back, to the patients and their families and to those who are taking this on, that's what I'm happy to do and so I really do appreciate the opportunity to talk with you. I think you've asked me some really interesting questions and the, the work you're doing is very interesting as well. I'm so glad that you're both here. Well, it's constant and, uh, have compassion for the oncologist. That's all I ask. It's really hard. It's really hard for them. And the more compassion you have for them, the more they can have for their patients and families. I mean, just asking, how is your day going? I'm in the stairwell and the oncologist will say, I've had three DNR conversations so far today, so it's, it's,

Tina: 44:27

Yeah.

Janet Abrahm: 44:27

the compassion is real.

Tina: 44:29

Yeah. It's heavy, heavy stuff.

Janet Abrahm: 44:31

Yeah. It's heavy stuff and they're doing wonderful stuff and they love their patients dearly. Yeah.

Tina: 44:36

Yes. Well, was there anything else, Leah, that you wanted to ask?

Leah: 44:41

I was just going to ask, is there, is there one piece of advice in terms of now that our listeners are, are aware of what supportive and palliative care is like, is there any specific time that they should request this I mean, is there any specific time when, um, When you feel like it's good for a patient to ask to see a palliative care doctor.

Janet Abrahm: 45:06

Well, I think that we don't have enough palliative care doctors to see everybody. And I do feel that if you've been diagnosed with an advanced form of cancer, that is not likely to be curable, that from the very beginning, at least meet with a palliative care team. There was just a recent report at the national meetings of the cancer organization that meeting in the beginning, especially for patients who have lung cancer, and then meeting in If the treatment changes or meeting, if you're hospitalized, that that's. That can provide all the benefits, um, of meeting like in a regular way. Now those patients were tracking their symptoms, so if their symptoms went really crazy, they asked to see a palliative care person, of course. But even if your symptoms aren't crazy at the very beginning, just meet somebody and say, you know, for this, for my road ahead, I need a partner and I'd like to meet with a palliative care team. And then that palliative care team will reach out to you afterwards, as often as they can and depending on what your needs are. And that way when, the time comes that maybe the treatments are more burdensome than benefit, you have someone to, to help you through those decisions. You and your family.

Leah: 46:26

Great.

Tina: 46:27

All right. Well, thank you again for joining us. I mean, this has been really educational and a lovely conversation.

Janet Abrahm: 46:33

Oh, thank you.I I think so too.

Tina: 46:35

And again, I just commend you for all the work you're doing. And, and

Janet Abrahm: 46:38

Thank you.

Tina: 46:39

I feel like you're taking some time out of your schedule to help us out. Bring this palliative care talk to our listeners is very generous of you. So truly appreciate your time and all the work you do.

Janet Abrahm: 46:50

Well, again, it's all my pleasure. And if you know, they want to go to the website again, understanding it's designed for, for the doctor part of it, but I might be able to put them on too. Other resources, um, Dr. Vicki Jackson wrote a wonderful book for patients and their families that I could recommend. It's from Johns Hopkins University Press for people who like to read. It's really very patient and family focused. And, uh, she's the head of the palliative care program at Mass General. uh, has been in the field for over 20 years. So I would recommend her book to everybody. Also, Mortal Lessons by Joanne Lynn. Those two are, are great.

Tina: 47:28

Okay. We'll put links to those books in our, in our show notes.

Janet Abrahm: 47:32

That would be great. Thank you for doing that. That would be terrific.

Tina: 47:35

your book as well, of course.

Leah: 47:37

And your website. We'll put, we'll

Janet Abrahm: 47:38

oh,

Leah: 47:39

everything.

Tina: 47:39

Links will abound.

Janet Abrahm: 47:41

oh, wow. That's wonderful. I really appreciate it. And if you know, you, if you think of things that I could. Uh, be helpful with the future. always happy to come back.

Leah: 47:48

Thanks for listening to The Cancer Pod. Remember to subscribe, review, and rate us wherever you get your podcasts. Follow us on social media for updates. And as always, this is not medical advice. These are our opinions. Talk to your doctor before changing anything related to your treatment plan. The Cancer Pod is hosted by me, Dr. Leah Sherman, and by Dr. Tina Kaser. Music is by Kevin MacLeod. See you next time.