Two Docs Talk Hospice and Palliative Care

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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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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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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.

Hello, I'm Dr. Michael Koren I'm the host of MedEvidence. I'm a cardiologist and I have the distinct pleasure of having Dr. Alpha Patel join me for a series of discussions about palliative care and hospice. She shared with us some very moving information about her dad who went through a very long course being treated for oral cancer, trying to decide between a curative approach and a “palliative surgical” approach. Eventually decided on palliative surgery. Did some radiation that was palliative and had a lot of ups and downs but still with us and is actually doing well in a palliative care environment. Dr. Patel and I are also clinical trial people. In our final session in this series, I want to talk a little bit more definitionally and help people understand the difference between hospice and palliative care. How we can study it and how it has been studied in the past and the challenges of studying it in a critical way. The way we study other areas of Medicine. So with that do you want to briefly describe palliative care versus hospice?

Yeah, so palliative care is to provide comfort for chronic medical conditions for patients with certain diagnoses such as Alzheimer's, congestive heart failure, COPD any severe chronic medical condition. They can be enrolled in palliative care even cancer patients who maybe have slow-growing indolent cancers that they don't undergo Curative treatment for can also be in palliative care. However, once you decide to stop any type of treatment for that cancer or underlying diagnosis, then you can enroll in full-term hospice if you have six months or less to live. Some of that is subjective, no one can really gauge that and you can definitely be re-certified in that process after the six months. 

So just to reinforce that for people who are listening in now, a full hospice care as a Medicare or insurance company approved benefit is typically for certified people who have less than six months to live. And I think we should also point out that you know hospice and palliative care do a lot of good and a lot of caring is involved. Still, it's not a completely eleemosynary alimentary scenario exercise. I use that word because you know I like to throw in SAT words every once in a while but the eleemosynary is charitable and people actually get paid for this to be clear. 

Absolutely and so people are part of organizations that provide these services, either nursing homes or Home Health Services Etc. They get reimbursed by insurance companies for the services they provide to people who fall into these conditions. So the definition for Medicare purposes is having a limited prognosis but for palliative care. There's a much broader inclusion

Yes yeah, I've had patients in palliative care being there for over five years and they're still in palliative care. Still, it gives them and the family additional resources where they're able to get equipment, things set up in their homes, CNAs, and the medications are then provided by hospice. And it makes it a lot easier for the patients and families to take care of the sick patient. I used to think the palliative process was also something short term maybe a year or two. But it can be as long as it needs to be right? S so again we're clinical trialists and the questions that we ask are does it work and how do you know it works typically when we do clinical trials we use certain procedural concepts that are tried and true. And one of them is the concept of randomization which means that you decide by chance if somebody's going to be getting treatment A or treatment B or diagnostic test A or B or something that you're testing that's new versus the control or the old way of doing things and that's picked by random. That's why it’s call randomization. So that's one concept. Then we have the concept of blinding and that's to prevent biases. If you believe in treatment, it's only natural that if you know the patient's on treatment A you may look at that patient differently than if you didn't know what that patient was on. So we like to be objective in clinical research and blind people. So these are two very important things but are they possible when we look at palliative care? If we want to know if an aggressive approach and just doing things the way we always do it versus a palliative care approach is going to make a difference. Can we utilize these tried and true measures of clinical trialist thoughts?

I don't see why we can't measure it I mean you know in those patients that undergo palliative care at some point. I feel like they have been offered aggressive treatments and maybe either they were not candidates for them medically or the patient opted not to have them. It would be interesting to see how that cohort of patients does versus the ones that decide to just get comfort. Do they live longer? What type of quality of life do they have? What are our outcomes with the types of aggressive treatments that we suggest to patients? 

So yeah, and those are great points. To get back to the point of randomization, people don't always realize that you can randomize by the patient, which would be very difficult in a palliative care study. So if you said okay we want you to sign up for a trial we may put you into palliative care or we may treat you as aggressively as we possibly can.  I'm not sure that would work for an individual patient because obviously, they would want to have a little bit of control over that situation but what we could do is randomize by site. For example we can have a place that treats cancer patients or congestive heart failure patients and have palliative care as an option that's presented to every single patient. And that is the first option that's presented to the patient doesn't mean that patients have to do that but in that one site that's given as the primary option. Whereas another site by random just goes about their business in the usual way. They don't offer palliative care as their first option. Obviously, if a patient asks for it you would of course let them know it's available but the intervention would be in one place where telling everybody right up front. That this is an option the other place it isn't and then we can compare the experience between the places where it's the first option versus where it's not a focal point. So that would be a randomized study and then the IRB (Institutional Review Board ) would have to approve as far as blinding is concerned. But the Physicians would not be easily blindable in those circumstances. But the patient could be. Right so the truth is that there are practices out there that have more or less of a focus on palliative care. So the patients don't even necessarily need to know under these circumstance that this is being studied at the site level because their experiences is with the different practices. So you have to be able to use a practice that is equally comfortable with their primary focus being palliative for certain congestive heart failure patients versus the aggressive approach that has been the standard for many years. So they're always a way around these things is my point. Then to your point about outcomes measures you have to again give the patient the opportunity. Just like your dad had the opportunity to define what their measure is. Because what we've learned is that a outcome measure that is part of a typical research study is going to be somewhat focused on what the regulatory authorities think is important and what doctors think is important but not always what the patient thinks this is important. 

Right and in something like this what the patient thinks is important is is really arguably the most important thing. So perhaps we could set up a study where the patient defines their outcome measure and what you ask them what is the most important thing to you and then that becomes what we try to achieve right now. Of course the length of life is something that's easily measurable and that should certainly be something that we look at and that'd be important. There are surveys that can be done to talk about the quality of life and some of these have been validated surveys. So we can certainly look at those things but perhaps the thing that would change this dynamic is that you have a primary endpoint. That is patient derived now not all patients are articulate enough to say that so we have to give them some choices of course but they can decide. You can say okay what's most important to you living as long as possible, eating as many meals as possible, taking a walk every day, You know just decide and we're gonna see if this system gets you to your goal more or less depending on what we do. How we randomize you. Just some thoughts in terms of how you might want to structure that type of trial.

Yeah I think it would definitely be interesting and it'd be interesting to see if which companies can achieve this better versus others because patients have choices in the companies they use for palliative care or hospice. It's a covered benefit under most insurance companies but it's administered by different groups and it would be an interesting study to see if one group does this better than others. 

Exactly so the other thing of course is cost I use the word eleemosynary before and the government is not exactly eleemosynary either so the reason they pay for this isn't because they're kind and benevolent it's because they're trying to save money. Let's face it so their concept would be okay if we give people the option of comfort care maybe they don't do expensive surgeries maybe they don't purchase expensive chemotherapy chemotherapeutic agents Etc so that's a fair game. Though I think using a cost as an outcome measure would be important and we may be surprised. We may be looking at a situation where you have a palliative approach that not only achieves the patient goal more frequently but also reduces costs.

Yeah reduces I think recurrent Hospital admissions, ER visits, and medication. Overutilization all of that 

Yeah and I think those would be important endpoints to look at and looking to see whether or not an approach and the fact that we have a whole system in place and resource in place for patients where they know that we're looking at comfort outcomes not just longevity outcomes could make a huge difference.

Yeah definitely 

Yeah so we're close to the end of our time and so maybe you can just summarize some of the things that you've learned through this journey and I'll give you the last word but maybe cut in on a couple of quick thoughts that I have

Okay, so I think I've learned from this whole thing that the palliative or comfort care options are important to the patient and the family and what they can withstand. I mean watching the struggle my dad went through was very difficult to see somebody just literally not even be able to drink anything. It affected the whole family and I think now having some of the support and what we've decided to do as far as just comfort and not doing all these aggressive treatments has helped us feel more calm and at ease. I think families have to realize when it comes to that point that you're not really giving up on your loved one you're just really trying to make sure that they don't suffer more right

Yeah and what I learned from our conversation is this great idea that patients do have the capacity to define their own goals and it shouldn't be a unique concept in clinical research but it is because we're always defining the goals for the patients.

Yes yes and the discussion about palliative care and hospice is a great opportunity to have Physicians help patients define their goals

Absolutely 

and then once we do that then we're very clever at creating research mechanisms and protocols on how to see whether we can help them achieve what they're trying to achieve.

sure and I think you know being that I was in the medical field and I was able to make some changes in the way they were administering treatments or protocols made a big difference for my family but I feel like patients need to be their own advocates in that too. We know we always see the patients who've done their Google searches and we're looking at that you know and balking at it but I think an informed patient is great to have.

Absolutely 

Yeah absolutely you know of course Dr Google as they like to call the situation is a double-edged sword and people can go down the wrong road but true in fact that's one of the goals for MedEvidence is to help people understand things ask the right questions is extremely important. And then realizing on the internet there's a lot of content that's sponsored and people are trying to move you in a certain direction because of their proprietary interest. But here at MedEvidence we're interested in being objective. We're interested in finding the truth behind the data. And I think our conversation has taken us a long way to understand that in the palliative care space. I truly appreciate your time. I really appreciate the fact that you shared these personal insights . I'm so happy to hear that your dad is doing well and that your entire patient population is going to benefit from your experience because I too have had some family issues that involve taking care of loved ones. I think it's helped me tremendously in terms of being a better clinician I'm sure.

Yeah and until we experience it ourselves, I think we can discuss it with patients all day, but we truly don't understand what they're going through you know?

Absolutely Alpa thank you so much thank you and I'm sure my dad would love to have you over for dinner now 

That sounds pretty darn good to me.

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