Welcome to MedEvidence: Two Docs Talk Hospice and Palliative Care Part 3. In this episode, Dr. Alpa Patel shares how her family looked at palliative care from the standpoint of the family and what dynamics came into play to help them make their decision.
Whether you are a patient, caregiver, or healthcare professional, this series is the perfect resource for learning about hospice and palliative care. Tune in to gain a deeper understanding of these important healthcare topics and to discover how they can help improve the lives of patients and their families.
Listen to the whole series:
Two Docs Talk: Hospice and Palliative Care Pt 1
Two Docs Talk: Hospice and Palliative Care Pt 2
Two Docs Talk: Hospice and Palliative Care Pt 4
Alpa Patel, MD, is an internal medicine expert in preventive care and patient-centered services at Millennium Physicians Group and has been practicing clinical research for 16 years at ENCORE Research Group. She received her Doctor of Medicine from, the University of Florida College of Medicine, Gainesville, FL. with her residency at the University of Florida Health Jacksonville Department of Internal Medicine, Jacksonville, FL.
Michael J. Koren, MD, is a practicing cardiologist and Chief Executive Officer at Jacksonville Center for Clinical Research, which conducts clinical trials at 7 locations in Florida. He received his medical degree cum laude at Harvard Medical School and completed his residency in internal medicine and fellowship in cardiology at New York Hospital/Memorial Sloan-Kettering Cancer Center/Cornell Medical Center.
He is a fellow of the American College of Cardiology, fellow and two-time president of the Academy of Physicians in Clinical Research, and the regional chapter of the American Heart Association.
Original Air Date: March 31, 2023
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Two Docs Talk: Hospice and Palliative Care Episode 3
Recording Date: March 31, 2023
Welcome to MedEvidence where we help you navigate the truth behind medical research with unbiased evidence-proven facts powered by ENCORE Research Group and hosted by cardiologist and top medical researcher Dr. Michael Koren.
Dr. Koren: Hello, I'm Dr. Michael Koren I'm a cardiologist and host of MedEvidence. Today we have Dr. Alpa Patel sitting next to me, sharing this fascinating story with us about her father who was diagnosed with oral cancer. He went through his process of considering major surgery that could potentially cure his oral cancer issue but perhaps leave him without the enjoyment and meaning of life. Mostly the ability to eat normally and to consume and cook and be part of the whole culinary experience. He had some previous history of having a peptic ulcer problem that was treated with a very unorthodox surgery that left his GI tract in a little bit of a different state than most of us. And he was diagnosed with oral cancer by a dentist, went through a series of consultations with different Physicians, and ultimately lands on a CO2 laser treatment for his lesion. Which worked for a while, but then he had a recurrent that was even larger than the original problem, and then he was advised to do palliative radiation. The palliative radiation wasn't the best thing in the world, and it had some complications of that and there was a discussion about moving to overall palliative care, which was just going to be about comfort without any aggressive measures at all, but then he responded to the radiation, so you had this very interesting decision to make where all right well this was unexpected do we change our gear and go back to a more aggressive approach, or do we just go back to this comfort model. So, I want you to pick up the story from there.
Dr. Patel: So, in January when we had our follow-up again, we were ready to go into full-blown hospice care, but this almost 50 percent improvement shocked all of us. So, my dad decided to go through another round. However, I had a discussion with the radiation oncologist. I felt like the way they did the radiation was very aggressive for him. It was twice a day for two days in a row, four treatments over two days, and they call it quad chop therapy. They do that for palliation because a lot of patients treated at Mayo come from other parts of the country. This way they have shorter stays, and they can get treated and leave. Well, I said we live 15 minutes down the road. Can we make his a little shorter duration? Extend it out longer and see if he would tolerate this better?
Dr. Koren: Now, has that been received well? Having this doctor but in on their protocols?
Dr. Patel: So, the doctor looked at me and said “This is the protocol. I didn't write the protocol. This is how we do the protocol”.
Dr. Koren: Very rigid mentality.
Dr. Patel: I said, “I get it.” He said the studies were done like that. I said, “Why did they do this?”. He said I don't know I didn't write the study. He kind of got a little, I think, aggravated at me at that point, and I said, “Well I don't think he can tolerate that he didn't tolerate it well he ended up in the hospital and we don't want to do that”. So, he said I'm going to step out for a while, talk to my technicians, and come back to you guys. So, I thought he wasn't even going to come back into the room at this point, and the other thing I asked was for them to split it up and to hydrate him in between the sessions instead of us having to run to the hospital. So, he came back with a great approach. He said well, we'll do this. We'll do him on a Wednesday, Thursday, Friday, I'm going to give him this much less radiation. Now that the tumor shrunk 50%, we're going to hone into it a little bit more so that we don't have other tissues we affect, and we'll give him a rest on Saturday and Sunday. We'll hydrate him over the weekend, provide that nutritional support, and we'll do this again on Monday and Tuesday of the following week. We were like great we'll try this.
Dr. Koren: I love that little anecdote for a number of reasons. One is that you use your knowledge as a physician and your authority as being knowledgeable in serving your family's interest to change something that most people would not have been able to do quite frankly. Still, the other thing is that it highlights the difference between a protocol and clinical medicine. So obviously we live in the world of protocols running clinical trials, which are very important. They’re extremely important in clinical trials because you must do everything the same for every patient to determine whether the thing works.
Dr. Patel: Right.
Dr. Koren: But once you know the thing works, then you should have some leeway, and so some people get stuck on the idea okay well it's developed by protocol and if there's any leeway or any change, it may be wrong or maybe off or maybe doing some horrible thing. Well probably not because again, the clinical trial proved something, and then the way you implement that is something else. And I'm bringing that up because a core issue with the MedEvidence platform is to help people understand that the clinical world is complex. There are a lot of nuances and different sensibilities that you must appeal to as a clinician, and it should absolutely be based on science. Still, once you have that scientific basis, it’s okay to tweak things with that knowledge knowing that the underlying intervention is valid.
Dr. Patel: Right.
Dr. Koren: That's different from so many things where the underlying intervention has never been proven. So, anyhow sorry for that diversion.
Dr. Patel: That's okay.
Dr. Koren: But again, this is my every passion,
Dr. Patel: Many of their studies were done on younger patients than my dad. I don't think 80-plus-year-old patients were even in those studies he was talking about, so you must change parameters or protocols based on a patient's health status, age, and functional mobility, so I'm glad that he was able to help us with that. Well, this next round unfortunately my dad got worse.
Dr. Koren: So, this is now the Alpa Patel protocol.
Dr. Patel: My protocol failed us miserably, so he got to the point where he developed severe pain mucositis, oral thrush, and he wasn't tolerating anything. Luckily, I could work with a home health agency and set up IV fluids at home. He became so frail that he actually fell in the shower at home on February 13th, so he got admitted to Mayo and they told us that really there's nothing else we can do for your dad. We have no other therapies to offer you and we knew that at that point. They said we just need to make him comfortable, he maybe has a month or two left and they told us all this flat out. We were willing, we knew we accepted it. My dad still looked at them and said I'm going to be around for a while. As frail as he was, he'd lost 30 pounds in a month and had fallen. Luckily, he hadn't fractured anything so we said to the doctor can you provide some nutrition support because I really think a lot of this is the radiation side effects and because of the mucositis and the thrush, I believed was mostly from that and they said we won't do TNP in his health status. He doesn't want a feeding tube we're just going to send your dad to a rehab facility to see what can be done.
Dr. Koren: Was he enrolled in palliative care at that point?
Dr. Patel: No, we enrolled in the hospice palliative program after that discharge. He went to rehab to see if they could get him stronger and they did a fantastic job there, they provided some nutritional support, and they did physical therapy for three hours a day including speech therapy which got his mouth open now without pain. He was able to start eating and drinking there. The doctor had told us that if this round of radiation would work, you would know at about eight weeks whether it had helped last week was at eight weeks and my dad is eating normally now. He's walking around the house sometimes even without his walker. He's getting stronger, he's gained six pounds since he's now been home for a month, so I think this whole three-four-month ordeal has helped us.
Dr. Koren: Well, kudos to our rehab colleagues.
Dr. Patel: I just don't know when everything will start over again; at that point, he won’t get any more radiation now. He said he finally doesn't want any more treatments.
Dr. Koren: So, he's now in a full palliative care program?
Dr. Patel: He's actually in full hospice care now because we've stopped treatments. We are not going to get any more radiation because the side effects from the radiation were unbearable. Even though I believe that has helped him, we're just hoping that this will keep him comfortable for a while. His cancer recurred after three years the last time. If it keeps him comfortable even for a year or whatever, at least he's enjoying what time he has left.
Dr. Koren: And he's eating now?
Dr. Patel: He's eating, he's really enjoying it and he's really well.
Dr. Koren: That's great! He lives to eat.
Dr. Patel: That's his whole goal when he went in to see the doctor for the first time. He said, "what can you do to get my mouth open?”.
Dr. Koren: Fabulous. So, he's actually in a pretty good place at the moment?
Dr. Patel: Correct.
Dr. Koren: And involved in hospice care as you mentioned?
Dr. Patel: Yeah so, he's still pretty frail from the amount of weight he's lost, and his mobility is not the best, so we have CNAs that help come bathe him because we don't want another fall in the shower. But my mom's willing to help, my mom's youngest brother has moved in with us and has been helping us quite a bit with my dad, and now he's getting to the point where he wants to try to do too much and we're like you need to take a break and not fall again.
Dr. Koren: So that's interesting. Well, I'm so happy to hear that he's doing well.
Dr. Patel: Thank you.
Dr. Koren: I'm so happy to hear the process has played out successfully for him. I'm very curious from your standpoint as a clinician. How did this change the way you approach decision-making when it came to palliative care? Obviously, you had to deal with this many times before your dad so just share some of those changes. The way you think about things.
Dr. Patel: I think we need to be upfront and honest with what we want out of this. Just like when we went in this with my dad, they asked him “What do you want from this” and he said I want you to get my mouth open, and I think we need to hear that in the patient's words. What do you want out of this? Yes, you have a terminal condition, yes most likely you're probably going to die from this in a year or two or whatever, but during this time what do you want from us. And when we hear that as Physicians then it helps us better guide how we direct their care.
Dr. Koren: Yeah, let the patient set the goal. That's hard sometimes for doctors.
Dr. Patel: It's very hard.
Dr. Koren: Yeah, you know we're so used to setting the goals.
Dr. Patel: Yeah.
Dr. Koren: We're used to studying and thinking about following our protocols and setting the goals and we typically have a measure of success in our brains that may or may not be the patient's measurement of success.
Dr. Patel: Yeah.
Dr. Koren: So, that's a great point that spending time figuring out the patient’s goal is extraordinarily important. Have you had experiences where you were able to apply that in your practice since your experience?
Dr. Patel: I mean honestly, you know since we've been going through this process I see a lot of patients that are over eighty and I see them struggling with just activities of daily living and I've discussed more of the palliative options with them and their families since what we've been through because there's been a lot of support we've been given in the home by hospice just in accepting this whole process and I think it's helped me become a clinician where I feel like I can make these changes in my patients a lot sooner than later.
Dr. Koren: Yeah, well that’s a fascinating story. So, in our next session, we're going to switch gears a little bit and we're going to put on our clinical trial hats.
Dr. Patel: Okay.
Dr. Koren: So, you shared a lot of very personal stuff today and I really do appreciate that. Thank you. With that background, I want to flip the switch now a little bit and now we're going to be cold clinicians that are just setting up protocols and talking about this from a public health standpoint, but not forgetting what you just shared with the audience.
Dr. Patel: Okay
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