Welcome to MedEvidence: Two Docs Talk Hospice and Palliative Care Part 2. In this episode, Dr. Michael Koren and Dr. Alpa Patel discuss palliative care from the standpoint of patients that have serve chronic diseases.
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 3
Two Docs Talk: Hospice and Palliative Care Pt 4
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Two Docs Talk: Hospice and Palliative Care Episode 2
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 cardiologists and top medical researcher Dr. Michael Koren
Dr. Koren: Hello, I'm Dr. Michael Koren and we are here today with Dr. Alpa Patel we're talking about palliative care. In our first session, we talked about just some of the general terms that are related to palliative care and some of the general concepts that physicians deal with and think about when they make recommendations for palliative care and the things that the families need to consider. So, we have a unique situation with Dr. Patel because not only is she a very experienced internist but she's also somebody that has been dealing with decision-making regarding palliative care with regard to her father. And that gets into this concept of how physicians think when making recommendations for other patients and how that plays out when dealing with their own family members. There are some interesting tensions and emotions that go into that concept. And it's also interesting because as a physician in the family, the family is looking to you to help them make some of those determinations. What is the best course of action? So, if it's okay, we really appreciate you sharing this personal information with us again.
Dr. Patel: uh sure
Dr. Koren: Can you walk us through what happened with your Dad, tell us a little bit about him, tell us how he got his diagnosis and how that played out and then where you eventually got to the point where you considered palliative care?
Dr. Patel: Sure, so my father's 85 he's had a lot of chronic chronicles he dealt with. About 15 years ago he had a heart bypass. He's developed some chronic kidney issues since then. Back in the 60s he had a very unusual surgery. He had a partial gastrectomy where they removed part of his stomach and hooked up his stomach to the jejunum partially to the duodenum because he had a bleeding peptic ulcer. When he lived in Africa in the 60s, the doctor who operated on him saved his life. They said this was the first surgery done of this kind or he would have died. So his stomach anatomy is very unusual and has had severe dumping syndrome for years as a result of that, very brittle uncontrolled diabetes and it's a surprise he's actually made it to 85. None of his siblings have lived past 65. So everyone says maybe it's because he has a doctor in the house. But I don't know I don't take credit for it,
Dr. Koren: I'm sure you had some roll.
Dr. Patel: Yeah, about four years ago he got diagnosed with oral cancer, which his dentist detected. He had a lesion that they biopsied he had squamous cell carcinoma at that time. Because of his poor health and uncontrolled diabetes, he really wasn't a candidate for aggressive surgery. I mean the Physicians would have done it but we didn't want that because it would have required graphs. Removing part of his mandible, and feeding tubes, his stomach anatomy was so unusual that he didn't feel comfortable. Neither did we, with that so we opted to see multiple Physicians. We kept getting one opinion after another because all the surgical options given to us were like he doesn't want to do this. I finally made him an appointment at the Mayo Clinic and one of the doctors there recommended CO2 laser surgery. Where they just resurfaced that area and he even told us it wasn't probably curative and this could recur. We didn't know how long this would last, he didn't have any spread to the lymph nodes at the time. So that was a good prognosis.
Dr. Koren: When he was diagnosed, did they give you a sense of his expected life without treatment at that time?
Dr. Patel: They really didn't they said it was slow growing. Maybe three years prior to that he was diagnosed with lichen planus which was probably a precursor to this and it took three years in between that developing squamous cell carcinoma. They did say that his quality of life would probably be better with this type of surgery than all the aggressive options we were given with the CO2 laser.
Dr. Koren: Yeah and he did well?
Dr. Patel: He did quite well with that he had maybe a two three month course where it was difficult to eat.
Dr. Koren: That sounds interesting sorry to interrupt you but so that's the difference between curative surgery and palliative surgery, correct? So which is a concept for the people who are listening in that they may not be familiar with is that sometimes we go to completely cure the problem and get rid of the cancer but other times we're just managing it. Knowing that we're not getting rid of it completely but we're trying to prolong the life of somebody through a “palliative surgical” approach and hopefully not disrupting the patient's comfort in any major way.
Dr. Patel: It was really after seeing a third or fourth surgeon that we were even really given this option because we just weren't backing down at that point. He's just not going to go through this aggressive surgery there has to be other options.
Dr. Koren: So he did quite well for about three and a half years. Did you attend all those meetings with him with the different positions?
Dr. Patel: Yes
Dr. Koren: So how'd that go?
Dr. Patel: I think it went well. I think everybody always looks for a curative intent when it comes to cancer. They kept telling us, well this will come back and we knew that but we didn't know how quickly and the quality of life he would have had with the aggressive surgery. In fact, honestly, I don't think he would have survived the type of aggressive surgeries they were suggesting to us with his health status. I kept telling my dad let's just not do any of this. He was willing to because he was getting desperate at this point. I needed to do something but kept looking for more options because the options he gave didn't sound appropriate to me.
Dr. Koren: Yeah, I'm very interested in that dynamics so when you went into that room obviously having a position there is going to change the dynamic. In fact, there may be the sense that ultimately you should be the decision maker because you have the most knowledge and on the other hand, the patient is the ultimate decision maker. So I'm interested in that but the other thing I'm interested in was he a person that said I just want to live as long as possible and I'll do anything or was he focused on comfort more in these conversations?
Dr. Patel: So he's always been a person even now when he's in full-time hospice he keeps telling us I don't know why they're coming to the house I don't need this I'm going to be around forever. So he always thinks you know mortality isn't there and that's where we also are trying to get some help in him understanding that. But he also wanted to be able to eat normally that's been something that's been a big priority for him is nutrition and understanding how these procedures would have affected him made him rethink what he really wanted to do.
Dr. Koren: Right, the old question is whether we live to eat or eat to live. Which is more important?
Dr. Patel: Yeah, and he's lived to eat most of his life.
Dr. Koren: So yeah, I think the key part of making good decisions is knowing what drives people and gives them comfort and solace.
Dr. Patel: Yes, some patients just want to live as long as possible. That's their feeling, others say that it's all about quality.
Dr. Patel: Yeah, and he told us that if I can’t eat the normal foods, I like to eat I don't know what the point of living is. For me, however, he does want longevity but doesn’t want to give up those things. So, I had to have a conversation with him about his quality of life with aggressive surgery. Maybe cancer would be cured, but he would have had significant facial deformities in the mandible, removed grafts from his thigh and other areas of the muscle taken from his temple. He wouldn't have even looked the same and he said I can't look in the mirror at myself every day and see that. I don't want to do that.
Dr. Koren: During this process when they were recording, sending these very aggressive measures, did they give you a sense of what life expectancy would be one way versus the other?
Dr. Patel: I think they said that the life expectancy he would have had a curative intent if he had this aggressive surgery over five years but he was already 81 at that time with multiple chronic problems. So, my whole goal was that I want you to enjoy life I want you to be able to do the things you're able to do and not just be spending every day in the hospital and going to doctors’ offices and running around getting tons of medical care. When we could do things that could still let you eat and be more comfortable, maybe your longevity might be decreased by a couple of years but you'd live a better life.
Dr. Koren: Yeah, interesting so keep on going so, did you opt for the CO2 laser treatment?
Dr. Patel: Yes, we did and we did that in December of 2019. In the summer of '22 he started noticing that he was having difficulty chewing on that side and pain with chewing. So he saw his dentist again and they said that they thought it was just some teeth that were decayed that needed to be removed however, the pain became to the point where he had significant trismus and what I mean by trismus is almost like lock jaw. He couldn't open his mouth at that point. They noticed he had a lesion inside his cheek that was probably initially the size of a dime that was biopsied and found that he had a recurrence of cancer. It actually pretty aggressively increased to the size of almost a quarter over just a couple of months. He was recovering during this time from the teeth extractions and we didn't seek any other treatment until he recovered from that. But again we went back to the same surgeon that did the CO2 laser and this time even he offered us this aggressive surgery. I was like I can't believe that we came to you for a less aggressive option three years ago and he told us that there really wasn't a lot more at his age apart from this that he could do as a surgeon. But he mentioned palliative care to us from the beginning.
Dr. Koren: So was that the first time you considered a palliative care approach?
Dr. Patel: Correct, I think his initial surgery was probably palliative too because it wasn't a cure. That's the difference between palliative surgery and palliative care.
Dr. Patel: So just to make that clear, we asked if there was a simple surgery he could do again, and he said not a second time. He said that this was too large and too aggressive for him to do, and he did initially but he suggested for us to see the palliative care department and he suggested palliative radiation because in order for him to have the full course of radiation which would have been five days a week seven days. I mean seven days a week sorry you know five days a week for seven weeks. He would have had a feeding tube. From the beginning, my dad always told us he never wanted a feeding tube.
Dr. Koren: Sure.
Dr. Patel: With his stomach anatomy that would not be a pleasure for him. He said he's not going to be satisfied with us giving him food that way.
Dr. Koren: So that's a great point. So you know I'm getting to know your dad as you talk about him and obviously, food was a huge part of his life.
Dr. Patel: It was and that was a part of his life he didn't want to give up.
Dr. Koren: Right, and this is the concept of cure versus comfort again. For him eating was comfort.
Dr. Patel: Correct and eating was a pleasure. This was probably one of the few things that was enjoyable. Life to him was cooking, feeding others, and enjoying the meals. He asked what can you do to help get my mouth open. I can't open my mouth more than to get a straw in, which is very frustrating. So they suggested that we see the radiation oncology department at Mayo only for palliative radiation, which included just four doses of radiation given twice a day over two days. That was done right before Christmas he did not tolerate that well at all. He had severe pain and couldn't even keep down water. He ended up in the hospital getting IV fluids and even when he got home, it took three weeks to get better. To the point where he could just eat liquids and when we went back to the oncologist in January, we were going to tell them that we don't want this treatment anymore. We just want to enroll in Comfort Hospice Care.
Dr. Koren: Interesting that at that transition point, you went from palliative approaches that dealt with the disease starting with laser treatments and then radiation to improve function but not trying to cure the disease. Then you transition from that to a complete palliative care model where it was just all about comfort.
Dr. Patel: Well, that's what we were expecting out of the visit so when we went back to her as a follow-up in January, the radiation oncology said that even that little bit of radiation had made a huge difference in the tumor. The tumor had shrunk by almost 50 percent. If my dad just tolerated one more course of this, he thinks he could get this a lot better he could probably eat a lot more he would have less pain and it could prevent rupture one of the things we worried about was his tumor could have ruptured through his cheek. So even as frail and horrible as my dad felt, he heard all that and said let's do it. Let's sign up for another round and my mom and I were looking at him like are you really sure you want to do this it's been a horrible month you've been in and out of the hospital when you think you're even gonna make it and he said if it's helped this much I'm gonna tough it out and do another round.
Dr. Koren: We're gonna hold that thought for a second and we're gonna get back to it in our next session where we are going down the road it looks like we're going towards palliative care and then all of a sudden there's an unexpected success. And we'll get to that in our next session.
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