Welcome to MedEvidence: Two Docs Talk Hospice and Palliative Care Part 4. In this final episode, Dr. Michael Koren and Dr. Alpa Patel discuss palliative care vs. hospice and possible ways to set up clinical research options.
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 to 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 3
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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Transcript
Two Docs Talk: Hospice and Palliative Care Episode 4
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.
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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