Transcript
Speaker: This is the Pallium Podcast, a production of pallium.org, at the intersection of palliative and emergency medicine.
Speaker: I'm your host, Justin Bruton.
Speaker: Today I'm joined by Dr. Mariana Marea.
Speaker: Dr. Marea is an associate professor and a practicing nephrologist and clinical investigator at the Wake Forest School of Medicine in Winston-Salem, North Carolina.
Speaker: She is a recipient of NIH-funded awards and the Mid-Career Clinical Investigator Award at the Wake Forest School of Medicine.
Speaker: Her research has focused on addressing gaps in the care of patients with ESKD on hemodialysis with an emphasis on patient-centric care.
Speaker: She is dual board certified in both internal medicine and nephrology.
Speaker: Dr. Morea, thank you so much for joining me today.
Speaker: Thank you very much for the invitation.
Speaker: It's an honor for me to talk about patient-centered care in individuals who need hemodialysis.
Speaker: So one of the things that I've appreciated in talking with you previously is how you've been able to take a field that a lot of people don't think of as trying to marry patient-centered care with the kind of things we do to extend life.
Speaker: And you found a way to do that.
Speaker: So as a nephrologist, to what extent have you found palliative care to be important in the management of end-stage kidney disease?
Speaker: Yeah, that's a great question.
Speaker: And
Speaker: And this kidney disease is a, unfortunately, life-limiting, incurable illness as of now.
Speaker: Nevertheless, it is an illness that can be treated with some of the most revolutionary means ever developed in medical science, which are dialysis and kidney transplantation.
Speaker: But this means that patients with end-stage kidney disease on dialysis live with a burdensome condition and they often have many other comorbid illnesses.
Speaker: So having end-stage kidney disease means that patients inherently suffer from a plethora of symptoms that generally tend to grow in intensity with time unless the patient is eligible and can receive and receives a kidney transplant.
Speaker: So
Speaker: These perennial symptoms include fatigue, insomnia, pain, itching, poor appetite, and so on.
Speaker: And palliative care, as we know, focuses on symptom management and goals of care reassessment with a focus on quality of life.
Speaker: when traditional treatments do not offer sufficient treatment relief, symptom relief, I'm sorry, and are not expected to add appreciable quantity of life without further deteriorating the quality of life, right?
Speaker: So sometimes in the trajectory of end-stage kidney disease, a moment comes when treatment with full-intensity dialysis, let's say,
Speaker: three times a week hemodialysis, three and a half to four hours per each session is no longer in the best interest for the individual who enters the end-of-life stage.
Speaker: And that is the point where one could consider decreasing the intensity of hemodialysis by either having less frequent hemodialysis treatments or shorter treatments.
Speaker: dialysis treatments.
Speaker: And this form of decremental hemoanalysis for the purpose of palliative care and transition into end-of-life moments is focused on quality of life than biochemical targets.
Speaker: And so to answer to your question, palliative care is, I would say, a requisite component of a holistic system of care for end-stage kidney disease that is
Speaker: that can offer an adaptive dialysis treatments according to different stages and different needs of each individual on dialysis.
Speaker: That's excellent.
Speaker: I like how you talked about adjusting treatment to fit the needs of the patient and thinking about that.
Speaker: The weighing the biomedical markers we use with the needs of the patient and trying to think about their quality of life and trying to balance both of those things.
Speaker: It's a dynamic process.
Speaker: So how do you find that the needs for palliative care are addressed in patients with end-stage renal disease?
Speaker: Well, so...
Speaker: And in the real world, each dialysis unit would have a palliative medicine specialist, right, that works in concert with the nephrologist and the dialysis personnel.
Speaker: And by that, I'm referring to dialysis nurses, dietitians, and social workers.
Speaker: And as a group, this interdisciplinary dialysis team and palliative care team would address and adapt dialysis and medical treatment plans corresponding to the stage of
Speaker: illness for each individual with end-stage kidney disease, but in real world, it comes down to the nephrologists themselves to employ medications for treatment of insomnia, itching pain, tend to the patient's psychological needs, and initiate end-of-life discussions and offer palliative dialysis in proper scenarios.
Speaker: But with the current model of care that is rather metric-driven, high-paced, volume of care rewarding, there is a gap still in the way kidney palliative care is practiced in the community.
Speaker: Yeah, it sounds like you've had to employ those techniques that you've picked up just to make sure that those needs get met.
Speaker: Yes.
Speaker: And, you know, I think they...
Speaker: should be employed a lot more often than I admit I am doing.
Speaker: And, you know, our patients, we have to remember, though, that even when I need help, you know, I'm referring the patient to palliative care clinics.
Speaker: It's very difficult for them to actually go to those appointments because they deal with so many other, you know, kind of...
Speaker: schedules and appointments and dialysis itself that often we are left, you know, sort of seeing by ourselves as practicing nephrologists to try to meet all of these dynamic and complex needs.
Speaker: You know, that's an excellent point.
Speaker: They already have so much contact with the medical field already because of dialysis itself and because of their other medical visits.
Speaker: So you're right.
Speaker: Trying to get them to fit another appointment in their schedule is pretty difficult.
Speaker: Yeah, and there are only five days in a week, right?
Speaker: And for many of them, three days are already, you know, occupied with dialysis.
Speaker: And the other two are, you know, kind of at least to leave some of their life.
Speaker: I imagine this is the case with other services that they need, but because of how much time they spend in dialysis, whenever those things can be bundled in to the care they're already getting or concurrent with that process, it makes a lot of sense.
Speaker: So dialysis is not typically associated with palliative care, but you have patients on dialysis that are closer to the end of life, and you figured out how to incorporate a palliative care approach at the same time as managing their dialysis.
Speaker: Can you tell us more about that?
Speaker: Yeah, so, you know, there are certain clinical contexts in which I offer palliative dialysis or even dialysis withdrawal.
Speaker: And, for example, patients with an estimated life expectancy of less than six months or are irreversibly bedridden and have frequent hospitalizations and are on perhaps other mechanical support or who have severe cognitive defects.
Speaker: deficits and are very, very frail.
Speaker: So in these situations, I meet with patients, families, and caregivers, and I initiate end-of-life discussions and plans, and I discuss the pros and cons of palliative dialysis.
Speaker: Because with palliative dialysis, the treatment goal, again, it's aimed at quality of life rather than medical parameters.
Speaker: And so in the case of in-center hemodialysis,
Speaker: I discuss adjusting their or dialing down the treatments to either twice a week or still three times a week, but shorter sessions like two and a half hours or three and a half hours per dialysis treatment.
Speaker: But I want to emphasize that there is no single formula for palliative decremental dialysis, end of life discussions along process.
Speaker: and end-of-life decisions are very complex.
Speaker: And at the end of that process, the direction may be towards decremental palliative dialysis and then dialysis withdrawal or proceed directly to dialysis withdrawal or even maintain fully intensity dialysis.
Speaker: And sometimes the first decision is, or the first conclusion that is drawn after an end-of-life discussion and meeting is not the last decision.
Speaker: So revisiting goals of care
Speaker: should always be kept in mind when deemed appropriate.
Speaker: That's so true.
Speaker: It's not a, you mentioned that before, you said ongoing goals of care, and that's one of the things about palliative care.
Speaker: It's not a static process.
Speaker: Their comorbidities change, their treatment burden changes, the other things they're dealing with changes.
Speaker: So the target moves, and that's very true.
Speaker: Right.
Speaker: Yeah, and, you know, patients and caregivers go through
Speaker: through different coping mechanisms.
Speaker: And for some people, you know, obviously requires more time to kind of digest or, you know, adjust to the idea that, you know, things are moving to a point where, you know, medicine has reached its limits, you know.
Speaker: And I think dialysis, probably because it's just become such a routine part of somebody's life in many cases, that's such a big decision to transition off of.
Speaker: Right, right, right.
Speaker: And that's because, you know, when we start dialysis, rightfully so, we say that, you know, you reached a point, you meaning the individual afflicted with end-stage kidney disease, reached a point where without dialysis, death is imminent.
Speaker: So for them now to come and say, you know, we reached a point where even with dialysis,
Speaker: we are getting there and what is just becoming more and more maybe burdensome for everybody just to see how difficult they tolerate dialysis.
Speaker: So, yes, I think for some people, they have obviously a lot of emotional turbulence when they hear that.
Speaker: Other people just welcome that discussion with a big sense of relief.
Speaker: And in other people, you know, it's anywhere in between and they require or they want to have, you know, further thoughts about that.
Speaker: You've mentioned a bunch of the different techniques you've had to use to try to address the palliative care needs in your patients, especially since they already have so much contact with the medical system, you really need to provide a lot of that care yourself.
Speaker: What are some of the things that nephrologists learn in training about palliative care or is there much that they learn about palliative care?
Speaker: Yeah, that's an excellent point.
Speaker: So, for example, when I trained, my fellowship did not have the nephrology palliative care curriculum, but that's because the attention to palliative care in nephrology in patients with kidney disease and patients on dialysis has grown exponentially just in the past few years.
Speaker: So these days, more and more
Speaker: institutions, academic institutions have a nephrology palliative care curriculum integrated within the whole kind of nephrology education that we provide to our fellows.
Speaker: And also on the website at the American Society of Nephrology and many of the national and international nephrology meetings,
Speaker: there is more and more talk and kind of organized, structured, didactic sessions on palliative care.
Speaker: So I entered the practice of palliative dialysis and palliative care in patients with kidney disease without necessarily a former education, but
Speaker: you know, just by listening to the patients, feeling for their needs, and obviously reading and talking with other people, going to conferences, and listening to webinars, it's a skill that grows on you.
Speaker: And it's, you know, very compassionate.
Speaker: And it's something that our patients definitely need.
Speaker: And I think there will be more and more, you know, even more
Speaker: dialysis systems or networks that will start probably offering palliative care on a more routine basis.
Speaker: And such a setup is already in some parts of the country, but it's still kind of a big gap out there.
Speaker: Well, it's good to hear that that's an option that's starting to become available, even if it's really limited at this point.
Speaker: It sounds like there's people like you that are advocating for that, which is a good thing.
Speaker: So one of the things that's really fascinating to me is thinking about dialysis as a means of comfort measure.
Speaker: And how does it function like that for some of your patients that are on palliative dialysis?
Speaker: And how does that work exactly?
Speaker: Yeah, so in my experience, palliative decremental dialysis always fulfilled its anticipated role of comfort and end-of-life transition when I think that that approach would be useful.
Speaker: And very often I observed that patients and caregivers had this sense of lifting a burden off their shoulders.
Speaker: And it was a sense of, wow, I don't have to come to dialysis three times a week when I feel so sick all the time or, you know, kind of I know that, you know, the end is coming and that's okay if I don't come because the doctor said so.
Speaker: So it's a big, big sense of relief, lifting off burden, a big burden from their mindset.
Speaker: And then not only that it
Speaker: basically gives them more time to cope with the end-of-life symptoms or time to spend with their loved ones.
Speaker: But it also is kind of used, I see it as a very compassionate way of transitioning to dialysis withdrawal and hospice.
Speaker: So
Speaker: For some patients, you know, it's difficult to let it go, all of nothing, just from a day to another.
Speaker: So they have welcomed that, you know, kind of option of let's try to, you know, do a little bit less intense sessions.
Speaker: But, you know, I also want to mention, so these are the advantages of the palliative decremental dialysis there,
Speaker: But there could be some drawbacks when we think about palliative decrement of dialysis, and these have to be outlined and considered during a palliative treatment plan for these patients.
Speaker: And what I'm referring to is the possibility of developing volume overload in patients that are dialyzed less frequently.
Speaker: So by all means, we don't want to induce a prolonged suffering or more suffering to these patients.
Speaker: So
Speaker: So I'm offering generally palliative dialysis to those who have very small gains, fluid gains between dialysis treatments.
Speaker: And that's often the case in patients who are near end of life because they don't have a lot of nutritional intake, unfortunately.
Speaker: And I also discuss with my patients and their caregivers the goal of staying out of the hospital since the aims of palliative dialysis is for the patient to spend more time with their loved ones and have less interesting procedures, right?
Speaker: So I often have this.
Speaker: No further hospitalizations agreement declared between the patient, caregivers, myself as a provider, as the dialysis staff, and even the nursing home personnel as applicable.
Speaker: And that, you know, that it's, I find it is very considerate of, you know, the patients, the family, and all the resources that are available.
Speaker: That's really, you know, this is so interesting.
Speaker: I love hearing about this because it's what you said.
Speaker: You said several things there that I think are excellent.
Speaker: One, the idea that just abruptly stopping is a really, really tall cognitive barrier to overcome for a lot of people.
Speaker: So I think the idea of kind of graduated decremental, you said, you know, decremental dialysis, I think that's brilliant because it does.
Speaker: It gives them that chance to kind of enjoy the benefits of the extra time.
Speaker: And like you said, the ones who are closer to end of life anyways, they're probably not, you know, having lots of fluid gain.
Speaker: So it makes a little more sense anyways.
Speaker: It's more feasible.
Speaker: And I think you're right.
Speaker: It gives them some time to process.
Speaker: It gives them some time to think about the care transition, which I think is a big deal.
Speaker: And it actually reminds me in some ways of when we have people in the hospital and they've had multiple hospitalizations, it could be something totally different.
Speaker: It could be somebody with dementia that keeps getting recurrent infections.
Speaker: And sometimes the family wants that last try of doing antibiotics or something, and they may come to the conclusion, okay, the next time we won't do them anymore.
Speaker: But that last hospitalization or two, they have a chance to sort of do some limited treatments and kind of see how they do.
Speaker: And it doesn't feel like just this abrupt transition.
Speaker: They kind of get a chance to sort of slowly, slowly transition the care goals as opposed to some abrupt change.
Speaker: And I think just in human nature, it just makes more sense.
Speaker: People are going to have an easier time with that.
Speaker: Um, so I think that's, that's really brilliant.
Speaker: And, um, the other thing that highlights what you said is it's really tailored to the patient and the family, you know, the not, you know, not going back to, you know, let's make sure you don't want to go back to the hospital because the goal here is not to completely medically optimize you, but it's to improve your quality of life.
Speaker: So those negotiation plans, they take more time to do that.
Speaker: It takes a lot more time.
Speaker: Um,
Speaker: But it's patient and family-centered.
Speaker: Tell me about that.
Speaker: I think that that's really beautiful.
Speaker: The word that kept coming to my mind as you were talking about this, you said compassion.
Speaker: I think it is.
Speaker: It's kind of beautiful, you know, when you make a plan that says, I'm going to think about you as an individual and how to help get you through this the best we can.
Speaker: Tell me more about that.
Speaker: Yes.
Speaker: I mean, to offer patient-centered care obviously requires a lot more time at any level and in any medical field.
Speaker: And particularly also, actually, even more so, I should say, when it comes to end-of-life discussions and, you know, having to weigh all these different aspects of what is end-of-life going to look like and doing this form of palliative dialysis, which is part of, as we said, a form of the mechanism of coping with end-of-life, but it's
Speaker: you know, at the same time, you know, you're going to get sicker.
Speaker: So it's, you know, I'm preemptively trying to show them that this is how it's going to look.
Speaker: I mean, we were trying to keep the symptoms at bay as much as possible, but it's, things will still regardless get worse.
Speaker: And
Speaker: I find that social workers at the dialysis unit are extremely helpful.
Speaker: Nurses are very, very critical also to be part of that meeting, not only the social worker, but also the nurses, because they see a lot more often than we as doctors see them on dialysis and how much they suffer.
Speaker: And, you know, just having, hearing, you know, kind of the impressions and the
Speaker: heartfelt advice from all the members of the dialysis team, it's a very good tool.
Speaker: Maybe I shouldn't say tool.
Speaker: It's something that actually family members or caregivers and patients do appreciate and want to see.
Speaker: You know, it's kind of, we all care about them and, you know, it's not that
Speaker: we either, we don't want to offer dialysis anymore, but at the same time, you know, they do get sicker and they go to the hospital and come out and they are in the same condition at best, but usually worse.
Speaker: And, you know, it's just a cycle of worse and worse and worse.
Speaker: And, um, yeah, so it's, it, it is, um, take on some new benefits very rewarding to, to know that, um,
Speaker: especially when you see how appreciative the family members and caregivers and the patients are to open that discussion many times.
Speaker: Yeah, that's awesome.
Speaker: I imagine too, especially just because you have long-term relationships with these patients and these families, it's just such a kind of a meaningful experience.
Speaker: Painful, I'm sure, but really meaningful to be able to help them with that transition.
Speaker: One of the questions I have too is as wonderful as all of the work you're doing in patient-centered care is, what are some of the obstacles that you face in trying to initiate and conduct palliative dialysis in patients with end-stage kidney disease?
Speaker: Yeah, so I mean, indeed, it's, as I said, there is a critical gap, a large gap in the
Speaker: employment of palliative care in patients with advanced kidney disease and on dialysis.
Speaker: And there are many reasons for this, but I will probably try to mention just a few.
Speaker: For example, first and foremost, I would say that the research and the knowledge on palliative dialysis has been very scarce and
Speaker: the incorporation of palliative care curriculum within nephrology specialty curriculum and fellowship training, although has been growing, is not uniformly present across academic centers.
Speaker: So many nephrologists who are finished in their training don't feel as comfortable in having these discussions or recognizing when it's
Speaker: probably time to start having some early discussions around that end-of-life plans.
Speaker: And then there's also the issue of dialysis unit operationalization because in order to accommodate varied dialysis schedules is a challenge because it creates a string of administrative needs that must fit all of them into efficient workflows and
Speaker: properly staffed units, right, not overstaffed or understaffed either.
Speaker: And then there is, of course, the aspect of metrics-driven dialysis care and treatment-based reimbursement.
Speaker: And palliative dialysis and less frequent dialysis treatments would inevitably interfere with this aspect by causing no larger deviations from metric targets such as phosphorus levels or calcium level or intact PTH level or
Speaker: frankly, in that subgroup of population, it becomes meaningless, but yet it goes on the metrics as well as fewer dialysis treatments.
Speaker: So with all this being said, though, there is more and more optimism than ever, as I said, that patient-centered care in anesthesia kidney disease and patients who need dialysis is
Speaker: receiving more and more attention in that field of nephrology.
Speaker: Yeah, that's good to hear.
Speaker: It seems like there's a lot of tall obstacles to still be navigated.
Speaker: And I wonder, too, even just things like insurance policy and the way metrics are analyzed, if you have a subcategory that kind of keeps those patients from getting the nephrologist penalized for trying to do the right thing, if they're not on the same dialysis plan, that would be helpful.
Speaker: But that doesn't exist yet.
Speaker: Yes, yes, exactly.
Speaker: So I think obviously, you know, kind of in the metrics driven system and, you know, kind of policies, you know, that underlie all of this practice to a certain extent, you know, will need to be reformed, right?
Speaker: All the policies and, you know, the way that
Speaker: care is evaluated, patient care is evaluated way beyond the metrics.
Speaker: But it would be very complex to, as we know, to evaluate quality of care is very difficult.
Speaker: And I'm not talking only about dialysis, I'm talking about just across all specialties and
Speaker: And all these elements that I also mentioned, you know, more research and better education, you know, are all intertwined.
Speaker: You know, there is, you can have, you know, even if you had, you know, policies, or I should say policies don't change unless you have good evidence.
Speaker: And once you have good evidence, then, you know, you need sufficient training and implementation.
Speaker: So,
Speaker: you know, such a change is not going to obviously happen overnight, but we will get that, I'm sure.
Speaker: Well, I just, I've really enjoyed listening to your responses and what you're doing to try to address the needs for this patient population that I think could get overlooked easily and the needs that they have that need to be addressed in kind of novel and creative ways.
Speaker: So I really appreciate that.
Speaker: And thank you so much for joining me today.
Speaker: Thank you so much for the invitation.
Speaker: Thank you for having me.
Speaker: Thank you.
Speaker: For more information on current topics in the fields of palliative and emergency medicine, please visit palliem.org.
