Let’s talk about kidneys takes a deep dive into the chronic kidney disease patient journey. We’re here to inspire meaningful conversations and to help people living with CKD gain a full understanding of their disease. In today’s episode, we will explore the question of what matters most to a CKD patient and their family, after a kidney disease diagnosis. Join us as the supportive care team, senior program manager, Mary Beth Callahan, shares insights on how families manage their chronic disease and their care options.
New Speaker (00:32):
Mary Beth, I am so excited to have you here today. We’re gonna talk about what matters most to a chronic kidney disease patient and their family. And, honestly, that sounds like a pretty broad topic. I can imagine that there is a lot going through their mind. So can you tell me a little bit more and bring it into a more focused perspective?
Mary Beth Callahan (00:55):
Thank you, Bri. I will certainly give it a try. You’re right about there’s a lot going through their mind. The other thing is that what matters most changes over time for all of us. And so our supportive care team with DNA is really making an effort towards trying to understand what the patient’s values and priorities are. And from that we make a plan of care, but that plan is gonna change over time because chronic kidney disease changes over time. And our priorities are focused on people, who change over time. So the broad category is that we want to learn what matters most and align care for those patients in terms of that.
And so how do you get all of that done?
Mary Beth Callahan (01:48):
Well, it’s a comprehensive process. You know, it starts with assessment and it’s different for every provider as a supportive care team manager. I’m an extra layer of care for our practice, but some providers will do that in the course of their discussions with patients over time when a referral is made to the supportive care team. The first thing I will try to do is look through the record and find out a little bit about what I can about the patient, but it’s an ongoing assessment of what the patient needs are, what their priorities are, what the caregivers needs are. And we always have to think about the patient, and any of us as part of a system. And when chronic illness enters that system, sometimes it can be like another family member, not necessarily a wanted family member.
Yeah, absolutely. Well, and so can you tell me about DNA supportive care team and how supportive care differs from advanced care planning?
Mary Beth Callahan (02:54):
A, that’s a big question.
A loaded one.
Mary Beth Callahan (02:56):
Yeah. That’s a loaded question. You know, our director, Dr. Catalina Sanchez Hansen for the supportive care team, talked with people across the country. And we talked with partners within Dallas, nephrology associates as to what the title of our team should be. We found that supportive care is the broadest term so that it allows us to provide many resources in many different situations, supportive care, allows advanced care planning to be a part of those processes, you know, in 10 or 15 years ago, advanced care planning was a document. And then over time, the change is that advanced care planning is a process.
Mary Beth Callahan (03:42):
And so that’s a little piece of it.
Yeah. I mean, supportive care sounds a little confusing in the sense that it can, it seems like an intangible, right? Like, can you break it down even further than that? Is that even possible?
Mary Beth Callahan (03:54):
Well, I can try. Okay.
All right. We’ll take it. Okay.
Mary Beth Callahan (03:58):
So supportive care. If I am talking to a patient and they are expressing pain or symptoms or emotional distress or spiritual distress, I might want to assess further for what might be helpful to them in the course of their day to day life, which is still very vague. I know, and in some ways it’s purposely vague so that we can be flexible on our feet and address the patient’s needs. The caregivers needs as they change because they’re not the same for anyone
It’s the most necessary and most critical I can imagine, but also truly the most complicated.
Mary Beth Callahan (04:39):
It is indeed, you know, Bri and the most important thing about that I feel is to just be present and to listen in our busy practices. Sometimes we can forget how important that is and being fully present and listening is a simple thing that we are trying to integrate and improve across our practice.
I mean, and this goes back to something we talked about with David when we talked about keep screenings and that some of these continuous ways to, if you don’t have any symptoms, it sounds like some of the supportive care is being able to still identify ways even when there is not something glaringly obvious that’s that may to be going on. So how does all of that differ from palliative care?
Mary Beth Callahan (05:27):
Palliative care is an approach. And the, the essence I think of palliative care is to try to manage pain and symptoms, to improve quality of life. And palliative care is really something that is available. And I hate to say, should be offered, but really should be offered to anyone experiencing a chronic illness anytime in the process of the illness. Because again, it’s about addressing pain and symptom management. It can be done at the hospital level and that’s where 10 years ago the, the most primary palliative care was being done. But also now we have in-home palliative care. We have doctors and nurse practitioners that we refer to that can address that in home with patients.
So it’s an approach. And so is that something, is it something more extensive than, can you rate your pain on a scale of one to 10?
Mary Beth Callahan (06:27):
That is one of the things that a palliative care provider might use. The other thing that they wanna look at is how is that pain or that symptom impacting the patient on a day to day basis. And is there a way to alleviate that, to improve that so that their quality of life can be what they want it to be, or as long as they want it to be.
And maybe we should pull up for a minute and go at a higher level. I idea of what some of the goals are overall of DNA’s supportive care team.
Mary Beth Callahan (07:03):
I think the basic goals that we have are to understand what matters most to the patient to document that in a way that all the providers that pick up medical record don’t have to start over that conversation. They might pick up on the conversation, but that they know clearly what matters to the patient at that point and can continue the discussion. So understanding, documenting, and then most I aligning the goals of care for the patient, with what matters most to the patient, really listening to the patient.
I mean, I, can’t, you know, the authentic aspect of healthcare where it really goes down to, it’s not just what’s happening to you physically, but it really is a matter of what’s most important to them as well. I can imagine the documentation element of all of this is the physicians’ worst nightmare, but it’s also probably, you know, incredibly critical to the mission of you and your team to be able to be included.
Mary Beth Callahan (08:13):
Oh, it is. It is. And it’s a work in progress to make it in a clear location because our physicians, our providers, we want them to be able to see it from the hospital, from the dialysis facilities, from the office practices. So integrating that is an ongoing process. And I think ultimately it’s about shared decision making with the patient as the central point of care.
Shared decision making. I really like that. I like that you mentioned that. What does all of this mean in, in practical terms to a patient, as well as to DNA?
Mary Beth Callahan (08:51):
To the patient? We hope that as the process goes on with the patient, we hope that it means that they feel heard and that their symptoms and pain is assessed. And that we, we talk to them about all of the treatment options and active medical management without dialysis being one of those options and that we can support them in that care. So for the patient, you know, we hope that they feel that we are listening and following what they’re telling us for the providers. It’s sometimes difficult because we do have patient so many patients in each practice location, and everybody is different with what their goals of care are. So it’s important to really listen. I think
Something that you didn’t say, but I think is one of the most important and is right between the lines of that is that you’re helping patients feel a little bit of control, right? They’re dealing with something to, it is so wildly out of their control that by just, you know, the different approaches that you all have in that methodology, I’m sure can ease a little bit and bring a little bit of peace, just even in the sense of shared decision making, like you said I can imagine is, is critically important in all of this, where do advanced directives fit in?
Mary Beth Callahan (10:19):
First of all, maybe I could give an umbrella.
Yeah. Please do.
Mary Beth Callahan (10:23):
I do think of advanced directives as a very large umbrella that allows many possibilities. The basic advanced directive possible would be considered a healthcare power of attorney. And that’s where, in my case, I’ve named my husband as my first person who could speak on my behalf about medical decisions, if I’m not able to, then I’ve named my daughter, if he’s not available and a friend, if neither of those are available, now, that is good. And that’s important. However, if they don’t have any clue, what my wishes are, my wishes are probably not gonna be followed.
Mary Beth Callahan (11:07):
So an important part is the medical power of attorney, you know, in most of the states there’s living will, which comes a little closer to being able to provide information to the decision maker, should the patient not be able to speak on their own behalf? It gives the idea of if you want certain types of life sustaining support or not, and you can specify. So that is very helpful. One of the things that I think is most beneficial for our patients and is used widely across the country and internationally is the program prepare for your care, Which is state specific and allows the patient. It’s a patient facing program. Okay. Created through a lot of research and a lot of changes and it can be found to prepare for your care.com. It allows the patient, not only to name the medical power of attorney, but to also talk about what they would want in certain situ we all have trade offs that we would make under certain situations. And the more we can tell the people who are gonna make decisions on our, on behalf, it’s a gift to them.
Mary Beth Callahan (12:28):
And then it also honors the patient’s wishes.
Absolutely. I mean, those are incredibly important documents and those are things you’re able to execute on their own from that website that you mentioned prepare for their care.
Mary Beth Callahan (12:40):
They can do that. Now. I would also like to continuing under the big umbrella of advanced directives, I think in the past 20 years ago, people really thought of advanced directives as a do not resuscitate order.
Mary Beth Callahan (12:56):
And that is one of the possibilities that can be made in, in the hospital or do not resuscitate order or allow natural death is possible. You know, but also the thing that I think is important and I find very prevalent is that people don’t understand that a do not resuscitate order from the hospital doesn’t carry outside the hospital. So there’s a special document called in and out of a hospital, do not resuscitate order that we can work with the patient and the provider to complete. So it’s a broad category. The other thing is under that, our goals of care discussions, where we have the provider or myself talking with the patient and family members trying to elicit what their goals of care are by asking a set of questions.
Because I can imagine that’s not something you easily are all of a sudden wanting, you know, these are conversations that are likely avoided for a reason. And so then it’s tough to ask yourself those questions and decide in that moment, how you want things to, to be done. And so is all of this advanced care planning or is that something separate?
Mary Beth Callahan (14:09):
All of this is under the bucket of advanced care planning and a subset of advanced care planning or advanced directive.
Okay. Perfect. Sounds like the medical power of attorney is something that we all need at any age, no matter what age you’re
Mary Beth Callahan (14:25):
At. That’s right. You know, this became crystal clear to me a few summers back when 25 year old friend of my daughters was in an accident with a golf cart, and had a traumatic brain injury. And I had never thought before that, about my daughter needs one of these, you know, because she’s over 18. And then secondarily, a 55 year old friend of ours came back from Ireland with brain cancer and she did not have this. So anyone over the age of 18 though, it’s hard to think about. It was easy for my daughter to agree to that after seeing her friend go through this experience. So anyone over the age of 18 really needs to have at least a medical power of attorney.
And is that something that they can, is that something on that website that you mentioned, and I okay. That they would be able to go out and fill out right now on their own?
Mary Beth Callahan (15:18):
Exactly. The only thing about on the own is that it does require whether you get it off the state of Texas website or prepare for your care.com. You either have to have two witness who witness the signature that are not family members or your healthcare providers are a notary. Okay. When either are, and then that makes it a document, a legal document.
It sounds like I have some a to do list to do once we get done recording here. I’m so glad you mentioned it though, because I do think that this is critically important and I’m not sure if you’ve covered kind of all of the different documents that are available. Are there any that we haven’t discussed so far?
Mary Beth Callahan (15:59):
That’s all that’s coming to mind right now.
I wanted to make sure, but yes. That’s absolutely something I need to add to my to-do list today.
Mary Beth Callahan (16:06):
I’m proud of you.
I will get it done. Okay. It sounds like there are other types of advanced directives as well. Did we already go into those?
Mary Beth Callahan (16:16):
We did briefly. Okay. You know but I, I think that the crux of the matter is that if you only have a medical power of attorney, then I, I wouldn’t know what to do on your behalf. Right? So the conversation is very important between the people that are going to be making the decisions if it becomes necessary, but also documenting it so that the providers have information on that and updating it at least every two years, or if we have a crisis in our health, that changes because our bucket list might change. Yeah. Our trade offs might change. Someone’s getting married in the family, or someone’s having a baby. You know, our, our priorities might change as to what we’d be willing to go through to have more time. The essence of these documents are about us learning. What’s important to the patient in terms of quality of life and on fruit or length of time. And what’s important now may be different as their disease progresses.
Yeah. Well, and something I’d love to ask too, is if somebody doesn’t have a, a ton of family, whether it’s within the states or just in general, they don’t feel like they have those family members to be listing on some of these documents. You know, I know with hospitals, sometimes you can’t have visitors if they’re not family necessarily. So is it, are there any regulations or you know, hindrances that may happen if it’s friends
Mary Beth Callahan (17:47):
To be your power of attorney.
To be listed in some of these documents and to have the conversations and have their involvement respected when it comes to.
Mary Beth Callahan (17:57):
No, that’s great. Sometimes, you know, we, we all have some dysfunctionality probably in our family. Yeah. You know? And so sometimes that is the case. And sometimes for older patients and family members, other people have died that were their sisters, siblings, children, sometimes. So just last week I had someone who did have two sons that she named, but she named a lifelong friend as well as one of her people that she wanted to be able to speak on her own behalf. Yeah. So friends are great. The important thing is that it documented and that those friends know.
That those friends know that they are going to be tasked with the involvement.
Mary Beth Callahan (18:38):
True. We encourage that the patient provide a copy of the document to whomever’s named in it.
Mary Beth Callahan (18:45):
And we, we make those copies for the patient if they would
Like absolutely. As an only child, my friends are my family. Mm. That was a selfish question for myself as well.
Mary Beth Callahan (18:54):
I hear you.
So I, it sounds like it’s important to get education and information as early on as possible, right. Rather than when you, all of a sudden, you know, get to a certain agent, you feel like you’re going to the doctor more often.
Mary Beth Callahan (19:10):
Exactly. Because we’re overwhelmed by so many things when either we are going to the doctor more often, or we have a health crisis of some type. So I’ve been making healthcare power of attorneys for many, many years and revising them over time. So I think tomorrow is the best day to do this for everybody.
Mary Beth Callahan (19:33):
I’m happy to help you, Bri, if you would like help.
I would honestly love that. If I’ve got any questions, you will definitely be who I’ll be going to.
Mary Beth Callahan (19:40):
But really as early as possible. And part of our practice change and improvement is to try and have these discussions earlier in the process of key year for patients to make it known to the patients that were available. Yeah. And that this is important to them.
You know, I can imagine if you’ve had, if, if you had some sort of diagnosis, but it’s not being talked about, and you’re not having this advanced care conversation until further in, it makes it feel that much more serious and that more concerning rather than we’re bringing it up early. It, it’s not because we’re concerned about where the direction of this is going. You know, it adds some level of just consistency and normality to the conversation.
Mary Beth Callahan (20:24):
Exactly. Exactly. And we are trying to improve this for all the patients in our practice, which are thousands, but we really do want to know what matters most to these patients early in the process of care and repeatedly. Thank you for bringing that up.
Absolutely. Well, and you talked about improvement, so improving of the process of advanced care planning, you know, something that’s only being done within DNA, or are there other practices across the country that you feel like are also following suit?
Mary Beth Callahan (20:52):
Well, that’s a really good question. And we have been very fortunate to have mentoring Dr. Hansen, Dr. Fuquay, and another partner and myself were involved in an 18 month mentoring program called the pathways project, which used the Institute for health improvements breakthrough practices for change. And what we learned in that process were there were about 17 other practices from across the country that we met together over this time is that using small tests of change is really what helps us create the change. But there are nephrology practices in other places in the country that are moving ahead with this, you know, and I’m listening all the time to podcast about this and to palliative care physicians and geriatricians and different topics. So it is becoming much more widely known and expected. You know, we want to offer the providers the opportunity to begin the conversation and refer to myself or someone else on the team if that’s comfortable for them. So, you know, there’s many ways we can accomplish the outcomes that would be honoring the patient’s wishes.
Well, and I, you know, I can imagine the answer as often, I wanna live long and healthy life and it’s, I can imagine some of these prompts are to get them to ask, follow up questions. I, you know, for my ground and staffing recruiting follow up questions are often the ones that yield the best answers.
Mary Beth Callahan (22:32):
Good point, good point. You know, one of the things that we find often is that the patient really wants to know sometimes what the prognosis is for them, whether that’s functional or time wise. And that’s a difficult discussion for providers and patients to have sometimes. But that is something that they like to know as we’re having goals of care discussions, the providers will start out the conversation with how much information would you like to know about what’s going on with your health? And some will say, oh, I wanna know everything. I wanna know the, and some will say, I just wanna know the big picture. Just let me know what I need to know. That’s it. So it’s important for us to gauge our conversation based on where they are in their readiness. Yeah. It might change in two months, but we need to honor their readiness.
I know for myself, I’m often like, should I record this doctor conversation? Because oftentimes as a patient, I feel like I don’t know if I blackout in the middle of a doctor appointment, or what’s happening? But I feel like all of a sudden I’m given a ton of really valuable information about my health and I leave and then you call your mom or you call somebody and they’re like, they ask you questions about it. And you’re like, you know, I would love to tell you that. I, I think we did talk about that, but I have no idea.
Mary Beth Callahan (23:51):
Goodness. And you know, that’s why we really encourage when we’re gonna have a goals of care discussion with someone, or even if I’m completing the advanced directive, prepare for your care with the patient that they add someone to the conversation, another family member, multiple family members, friends, caregivers, so that those questions can be asked and followed up on.
So what I’ve learned from our discussion so far is that supportive care or is it palliative care does not mean hospice,
Mary Beth Callahan (24:23):
Neither of those mean hospice. Hospice is an, a resource that we can use with patients. Hospice adds layers of care. Usually towards the end of life with patients, I have had patients stay on hospice for over two years, but it’s where a physician overseas pain and symptom management. And there is in-home services for the patients such as home health aid, nursing chaplains, social workers, and continually address what the patient’s desires are. An important thing that we hope to know. And hospice helps the, is to happen is where the person would wanna die. Is it in the hospital or is it home? And if it’s at home, you know, then we start talking about, do you wanna go to the hospital in case of X, Y, Z. So hospice adds a different layer of care. But it’s, it’s not the same as palliative of care are supportive care.
Well, why might it be important to have a hospice agency involved in some of this late stage of illness?
Mary Beth Callahan (25:36):
Well, besides the care that they give the patient, I feel in my own personal experience and my professional experience that the support it gives the caregivers and it 24 hour number to be able to pick up and call and say, this is what’s happening. What should I do? And if they can get someone out there at three o’clock in the morning. But additionally, I think one of the very important things is that after the death of someone hospice offers 13 months of bereavement support. And that’s really important for all of us. We, need to go through it. You know? So just many ways, what I often do is offer patients in caregivers, the opportunity to have an educational consult from hospice, not a referral, but to just talk to the hospice agency and find out what services they could provide. Absolutely. Talk to a palliative care agency, find out what services they could provide then we reassess.
Absolutely. I can imagine that would be a very good opportunity if nothing else, at least to know all of your options at that point. Exactly. So this is one of my last questions for you. If, if you could leave the listeners right now with, with one thought, what would that be?
Mary Beth Callahan (26:49):
Well for both patients, caregivers and providers, I would say, be curious, be curious, and don’t feel hampered by that curiosity to for the patient to be able to ask questions and to get the answers that they need. Cuz like you say, sometimes we don’t hear things the first time or the second time, but to be curious, additionally, I think for the providers, we need to hold a space for the emotion that comes from patients discussing this. We need to hold a space and allow that emotion and perhaps reflect back. But essentially we want to have that shared decision making, which is respectful the patient’s values and to do that, we need to learn what matters most to document it in a way that we can all find that, that information and then to align the goals of care. What the patient values.
I mean, that really is like we talked about bringing the, the human element into, to healthcare and I could not agree more about just being curious. I I think just living life that that’s one of my core values myself. So I can, you know, I would to love to be able to have that as a value of a physician as well, especially in this type of planning, but I’m so appreciative of your time because I know this is such a complex topic and I’m sure we really only got to, to scratch the surface in terms of all of the options and you know, resources that are out there and available to physicians as well, their patients. But I think you really did a great job of being able to cover that. I know I absolutely learned something and I’ve got a to-do list now. Thank
Mary Beth Callahan (28:33):
You Bri so much for having me. I enjoyed talking
With you. Absolutely. Thank you. Thank you. Thanks for tuning in today. Learn more about Dallas nephrology firstname.lastname@example.org. That’s D E P h.com. And if you found the information valuable, be sure to share with those also impacted by chronic kidney disease.