Serious Illness Conversation Guide: Aligning care with patient’s goals, values & priorities

Dr. Namita Seth Mohta serves as an advisor to ianacare and is Executive Editor at NEJM Catalyst.

Summary
Our guest, Dr. Namita Seth Mohta, discusses the Serious Illness Care Program at Ariadne Labs, which aims to ensure that all individuals affected by serious illness feel known and cared for on their own terms. The program utilizes the Serious Illness Conversation Guide, a set of structured questions that help clinicians elicit patients' goals, values, and priorities. The program also includes tools for patients to have conversations with their loved ones about what matters to them. The program has been implemented in over 50 healthcare systems and has had positive impacts on anxiety, depression, care experience, and cost. Trust and building relationships are key components of the program.

Takeaways

• The Serious Illness Care Program aims to ensure that individuals affected by serious illness feel known and cared for on their own terms.
• The program utilizes the Serious Illness Conversation Guide, a set of structured questions that help clinicians elicit patients' goals, values, and priorities.
• The program has been implemented in over 50 healthcare systems and has had positive impacts on anxiety, depression, care experience, and cost.
• Trust and building relationships are key components of the program.

Chapters
00:00 Introduction to Dr. Namita Seth Mohta and the Serious Illness Care Program
06:02 Defining Serious Illness and the Importance of Conversations
10:08 The Serious Illness Conversation Guide and its Impact
26:12 Serious Illness Care in the Context of Cancer
32:26 How to Access the Serious Illness Care Program

Resources

• Serious Illness Care Program
• Serious Illness Conversation Guide
• What Matters to Me Workbook
• NEJM Catalyst

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Transcript

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon”

Serious Illness Conversation Guide: Aligning care with patient’s goals, values & priorities

Wayne Jonas, MD (00:03.465)

Welcome to How Healing Works. I'm Dr. Wayne Jonas. Today on the podcast, our guest is Namita Seth Mohta. Dr. Mohta has a background in primary care and internal medicine and currently serves as the associate faculty and senior advisor to the Serious Illness Care Program at Ariadne Labs, a joint center for health systems innovation at the Brigham and Women's Hospital and Harvard School of Public Health.

One initiative at Ariadne Labs is the Serious Illness Care Program, which envisions a world where all persons affected by serious illness feel known and cared for on their own terms. A foundational tool of the program is the Serious Illness Conversation Guide, which we'll discuss today. The program recently launched a digital avatar-based training for clinicians to learn and practice difficult conversations with patients about their illness.

So before we learn more about that and the labs, I also want to mention that Dr. Mohta is one of the founding directors of the New England Journal of Medicine Catalyst, a publication that if you haven't accessed, you should do this. I'll have to say when it first came out a number of years ago, I was skeptical about it and I am totally sold. Anybody in healthcare who wants to improve healthcare, it's well worth their time accessing and reading the great examples, data, and tools that the Catalyst has. And so congratulations to you on that also. 

Wayne Jonas, MD (02:22.505)

I'd like to learn more about the person, as you all know. And so before we begin the interview, I'd like for Dr. Mohta to introduce a little bit more about herself and talk a little bit about how she actually got into this area. 

How did you become a physician? How did you get to Harvard? How did you get to Ariadne? And how did you get serious illness in those areas? Welcome.

Namita Seth Mohta (02:31.822)

Thank you. Thank you for having me. I'm looking forward to the conversation this morning. I always take the scenic routes to wherever I go. And my journey to where I am today has certainly been circuitous and one that I am proud of and excited about. Let me start physically. My entire life has been lived on the Northeast between a highway here called I-95 between New Jersey and Boston.

My upbringing, medical school, training, work experience has been up and down this corridor and has been physically contained to the Northeast, but my journeys have been able to take me internationally, professionally for many years now. And I would say that what brought me to medicine is what keeps me here today, which is...

the privilege and the joy of fostering real, authentic connections with people. And that started as a young person, literally the most stereotypical way of volunteering in a hospital, through to teams and people that I had privilege working with, both in college as a liberal arts major, I was a ethics and political science major, and then actually before medical school,

worked for a management consulting group called the Boston BCG, the Boston Consulting Group. And my commitment to building teams, and fostering connections with people brought me to medical school, then training in primary care, and during residency, having a real affinity towards taking care of patients with complex and serious illness. 

And, that led me to choose a profession clinically within hospital medicine, where I still serve today as a clinician at the Brigham and Women's Hospital, which allows me to not only take care of patients who have serious illness, usually and often at the end of life, which affords opportunity to take care of their families as well, but it also affords me the privilege of working with residents and medical students and house staff

Namita Seth Mohta (04:57.07)

to help impart the importance of meaning and purpose and connection in working with your patients and their families. Related to that is a commitment and a passion to improving the systems of care in which we provide care. So how do we think about big picture macro

thorny system level problems to improve care at the population level. And so in my journey of the last few decades, it has included work at nonprofits, at large healthcare systems, at startups, all of which I've now been able to bring to Ariadne, which is an organization committed to systems level change and commitment to a North Star of every person, every time

getting the care and specifically on the Serious Illness Care Program, care that is aligned with their goals, values and priorities.

Wayne Jonas, MD (06:02.313)

Yeah, wonderful. Well, thank you for that, for telling us your story there. What a great journey. I mean, I think so many clinicians will resonate with that story. Medicine, especially when taking care of people with serious illness, provides both the opportunity and the responsibility

to be able to go deeply into relationships. And in fact, it is relationships that we often remember, isn't it? It's not how many procedures or things we've prescribed, but the people that we were able to touch and touched us through the process and serious illness provides that opportunity. So tell us a little bit about what is a serious illness? I mean, isn't all illness serious?

Namita Seth Mohta (06:49.262)

Yes. Yes. And I would answer that question in two ways. And both of them will be unsatisfying to the clinicians who are listening to this conversation today. Because, so one is, serious illness is defined by the way that a person experiences their illness and the impact that it has on their day-to-day life.

Namita Seth Mohta (07:18.67)

And that is a subjective experience. There is no lab test, and there is no imaging study that I can do to diagnose you with a serious illness. So that is an unsatisfying answer to clinicians who are listening today, because we are used to data and definitions and exclusion and inclusion criteria. The second does have some objective criteria, which is those illnesses that

do objectively impact a person's ability to live and function in the way that they may have been able to prior to their diagnosis. That has impact objectively on their life. And our job as a clinician, I think, is to help them not only with the diagnosis, but with that transition to living with an illness.

not despite an illness. And therefore, there are a lot of Venn diagrams, if you use that definition, with, or sorry, overlaps with more traditional definitions of quote unquote disease in our medical model that we like to work with. So what I would put in there and what we'll talk about again later is certain types of cancers and oncologic diseases,

chronic illnesses, and this is not an exhaustive list, but may resonate with folks when I say COPD or congestive heart failure or severe diabetes, dementia, end-stage kidney disease, on or off dialysis, are just a few illustrative examples of what we consider, again, by no means exhaustive, what might we consider as a serious illness enough to be thinking about how do we customize your care with the serious illness care program to improve outcomes?

Wayne Jonas, MD (09:24.137)

That's a great definition. I actually like that. It helps clarify almost any chronic disease can end up being a serious illness if in the patient's experience and perception and function, it transitions them to a new type of life, a new experience in their life, a new functioning in life, then it becomes a serious illness in those areas.

Namita Seth Mohta (09:32.238)

Yes.

Wayne Jonas, MD (09:45.449)

The very word cancer transforms a person from perceived healthy to suddenly a perceived sick and becomes a serious illness. And so these conversations may apply across that journey also. So what is this conversation? You know,

What is it about? How does it happen? It sounds like it's not simply saying here's your lab test and this is the next drug you're going to get. There's something, what do you actually try to get at when you have these conversations with people? What is it about?

Namita Seth Mohta (10:26.062)

The goal is for patients to be known and cared for on their own terms. That is, I'd be hard pressed for anyone to disagree with that statement. If the goal is for patients to be known and cared for on their own terms, in order for that to happen, we need to actually...

know what the patient's goals, values, and priorities actually are. And then the way to do that is to actually have more, better, and earlier conversations about what those patient's goals and values and priorities are. So that is the North Star. And the Serious Illness Care Program is exactly that. It is a comprehensive program to support clinicians

to understand what patients' goals and values are, and to make sure and ensure that then the subsequent care decisions are in alignment. So it's really challenging to have conversations, but then have them just hang out, documented on a piece of paper somewhere. The goal is to then ensure that those conversations lead to aligned care.

The example that many of us that is overused and that many of us are all too familiar with is the extreme example of a patient who ends up intubated in an ICU and ultimately may even pass away in the hospital in that state when really what they wanted to do was be at home with loved ones in their living room.

So that is a concrete example of what I'm saying around goals and values and priorities and aligned care. With that North Star, what is the program now? The program is designed to have these conversations and has multiple different approaches to do that. It's a complex problem, easier said than done, and so we have a multimodal approach.

Namita Seth Mohta (12:44.75)

 One is a set of tools and a community built around that tools that is around support of the health system. And I can go into that in a little bit. It has three different components. The second is tools around supporting patients, having conversations with their loved ones about what matters to them.

So there is, just like there is a serious illness conversation guide that we'll talk about in a minute, there is a What Matters to Me workbook that we developed with a conversation project over with our colleagues at the Institute for Healthcare Improvement, which is a companion, they're meant to work together to help realize and elicit patients' goals and values. Because as you can appreciate, it's uncomfortable for

doctors and clinicians to have this conversation. It's also uncomfortable for patients to have these types of conversations. So our job is to make all of this more accessible at scale. The two other things that I'll add, and then we can double click into any of these tools is the role of where we are here now in 2024 of integrating thoughtfully digital technology.

The goal is not to have it replace the human connection. I spent my entire introduction talking about the importance of connection. The goal is not to supplant that. It is to how do we integrate digital technology to support it? And then secondly, to always have at the front and forefront of our mind, which is how do we, how are we always thinking about access for everyone and making sure that we are intentional about how we're building out our our tools and our team to ensure that it is focused on access and equity.

Wayne Jonas, MD (14:35.497)

Yeah, now, well, that's fantastic. That's a very comprehensive approach to trying to make this happen. I've experienced the training guide. I've gone in and done that. And also the digital enhancement with the avatar and that type of thing, which...

Wayne Jonas, MD (14:54.185)

I tried to probe that, tried to break it a little bit there in terms of answering the questions in ways to see if I could fool it. And it was, I didn't, I have to say I didn't fool it. It caught me at a number of those things. And after having done a number of the examples in it, it was remarkably realistic and remarkably impactful.

And so I found I learned a lot from doing this. And I think I'm pretty good at having conversations about what matters to you and getting at the person, you know, behind the illness to understand what they want and align that with their care. But this was really helpful, especially in the context of serious illness. I mean, some of the questions that are in both for the patient guide and also in the clinician training.

I noticed we're very carefully crafted and you've obviously developed them and tested them very carefully. I mean, the difficult thing that most people have is just starting the conversation, right? Let me, how do I now say I want to have a different kind of conversation than what we normally have when the person comes in for a visit and even questions such as in, you know, what is your understanding of your current health situation? And then listening to hear what that understanding was.

That in itself is a profound way to open things up and it really makes it both rapid and easier than it otherwise needs to be in those areas. So you talked a little bit about how it works and the support tools that you have in those areas. Can you talk a little bit about whether it actually does work when you do this?

Wayne Jonas, MD (16:46.505)

What benefits and costs perhaps are gonna be there? What challenges do you find in terms of trying to implement it? When you first start these conversations in a busy clinic, the first thing I thought is,, I'm gonna have to spend the time at this? And even though I know when I look back at it, it was a wonderful conversation, right? But at the time, it's like,

I've got to get through my day and is this a waste of time or is it going to cost me in the system time in those areas? But you've looked at a lot of that, right? So can you tell us a little bit about how it works? Does it work and how it's been evaluated?

Namita Seth Mohta (17:27.566)

Yes, I will do those things and I'll have us rewind for just a minute to our prior thread around your comment of, we're all pretty good at this already anyway. I also thought I was good at this and I was, and I am. What the conversation guide did for me personally is it is,

literally nine questions that I just am supposed to read. So advantage number one is it is a structured question error that where every, like you said, every question has been thoughtfully vetted, researched, the entire guide has gone through multiple iterations and multiple testing. 

The most signature or notable one of which was a randomized control trial back in 2016, a paper that was published that actually was at Dana-Farber Cancer Institute with patients with cancer diagnoses and showed, and we'll talk about this in a minute, of improved outcomes around anxiety, depression, care experience. Clinicians felt more confident in having the conversation. So point number one is,

what this guide does for me and for countless other physicians or excuse me, clinicians that I've talked to is it is a matter of just going down the questions and you get to the end and you have elicited in less than 15 minutes all that you would have needed to know had you had a very long winded 45 minute conversation with the patient. I would get there, that's why I'm good at it, but it would take me 45 minutes.

I got what I needed and established a therapeutic relationship with a patient by reading these questions. Second point of the guide. When you all look at it, and I hope our listeners will today, it literally tells you to pause and listen and stop talking.

Namita Seth Mohta (19:37.166)

We as clinicians don't stop talking. If you transcribe most encounters with patients, we do way more talking than we would be comfortable to admit. The guide makes us stop.

Namita Seth Mohta (19:57.422)

See, I'm having trouble doing it right now.

Wayne Jonas, MD (19:58.825)

Well, I mean, the data shows when we interrupt in 15 seconds or something like that.

Namita Seth Mohta (20:04.75)

Yeah. And so just to highlight a little bit for our listeners who may not be familiar, that's what the guide is. And it has discrete components about introducing the conversation, assessing emotion. There's a prognosis section that is very deliberately and with intention designed. 

Moving now to your latter question around, does it work and what is the impact, let me share a couple of different dimensions in which it works. Actually, let me back up. Before we talk about the impact, let me talk a little bit about our spread and scale so you know where the data is coming from. So currently, we directly at Ariadne have worked with over 50 healthcare systems to implement the program in various different...

sizes and shapes of organizations, some of which now are working independently. So we've worked with some health systems and those health systems have gone on to train to get to that 50 number. Over 230 clinicians have been trained in the guide. And then our estimates are that our work has touched over 2.7 million people in 2023 alone and over almost 5 million in the last 10 years of the program.

So that is the scale of our impact and that is the scale of where we draw some of our impact data from. So we both have, we have three levels of data. We have some of the research trials that I mentioned earlier. We have our own internal data that we track and manage, mainly through our community of practice, which is a group of now over thousand members from the serious illness care community who care and are invested in improving outcomes.

And then lastly, which we shouldn't underestimate, although we're never going to publish it in Catalyst, is anecdotal data. All three of those count. In terms of some of our published data, I mentioned earlier our randomized controlled trial that demonstrated improvement in anxiety and depression by at least 50% of the people who've been in conversations versus those who haven't.

Namita Seth Mohta (22:25.294)

There is evidence of patients, excuse me, clinicians being, I think it was over 70% of clinicians had increased satisfaction after incorporating these conversations into their practice. And we know from our firsthand experience and from talking to our colleagues, that clinician wellbeing is something that we need to and are paying close attention to. 

So that is another arm of what Ariadne in general and SIC-P (Serious Illness Care Program) specifically is exploring. And the other metric that we don't often talk about is around cost and the role of serious illness care and serious illness conversations in affecting both the denominator and the numerator. So when I say cost, when you talk about the value-based equation, it's traditionally, although it's evolving, quality divided by cost.

We can talk about improved quality outcomes, some of which I just mentioned. And then there's also the cost piece. And we have evidence from a trial done locally here with one of the primary care high-risk care management programs that demonstrated improvement in care delivery and cost. There was over $2,000 of lower PMPM (per member per month) expenses in the last six months of life. 

It was more changes that we saw the last three months of life compared to people who had conversations who didn't. That is not because we are restricting care. It is because we are authentically and genuinely eliciting patients' goals and values with an objective tool and then aligning their care plan with those goals and values. And so to me, the term I always use is appropriate care, not less care.

Wayne Jonas, MD (24:23.561)

Yeah, no, that's fantastic. I think this is so consistent with the ongoing and emerging data about what we talked about really at the beginning of this, which is deepening relationships in the care conversation and between the clinician and the patient has benefits in all the quintuple aims. It helps patients like it better. Their outcomes are better. The clinicians have better wellbeing and enjoy it, and it reduces costs, which is the counterintuitive component. I know that Dr. Chris Sinsky from the AMA published an extensive study about a year or so ago showing how relationships save money, and this actually shows that. So health services, administrators, listen up here. Relationships not only matter,

in our day-to-day practice for every outcome that healthcare wants, but it also does it and improves costs. So the way you've made it more efficient through these set of questions, the lesson I'm gonna take home and try to bring into our approach to the annual health visit, which is the healing-oriented practices approach, the HOPE visit, where we again try to get at what does the person want out of healthcare?, what matters to them and then align the care plan with that. We have a set of questions that I'm gonna look at yours and say, hey, can we make these more robust in that area? 

I'd like to talk a little bit about cancer care because we're launching here at Healing Works an initiative on whole person cancer care.

And I wrote a book with a colleague, Alyssa McManamon, an oncologist called Healing and Cancer, A Guide to Whole Person Cancer Care. And I know that serious illness conversations go on often in the area of oncology when people are diagnosed. From the time the word gets spoken, it almost turns it instantly into a serious illness for many people.

Can you talk a little bit about the use of the serious illness process and conversation world that you have created in care and oncology? Sounds like you've tested it in that environment already, but you could speak a little bit more towards cancer and some of the opportunities and challenges that you find in it.

Namita Seth Mohta (26:59.886)

Absolutely. So the root of this work is in oncology. So the history of the Serious Illness Care Program is actually rooted with our co-founders Atul Gawande and Susan Block, who Susan worked at, she's now retired, worked at the Dana-Farber Cancer Institute as a psychiatrist. 

Atul Gawande, surgeon at the Brigham also did, is an endocrinologist who did a lot of oncologic related surgeries, started out with their initial design and development of test of the conversation with oncologists and their patients. And the principles, whether it be in oncology or cardiology or pulmonology are all the same in that we want to elicit what patients' goals and values are.

We didn't, let me circle back to challenges, which is something I didn't mention earlier when you asked. Again, true in all disciplines, maybe a little bit more in oncology, which for many oncologists, and I am stereotyping here, is largely curative. We go into medicine to help people. And so part of what we have learned in working with our oncologists and the leadership teams,

at places like Dana-Farber, but other oncology centers, cancer centers around the country and the world is culture change matters. And that we can train every single one of your clinicians on our fancy digital AI powered platform. But if we don't include the components of culture change of an organization, those conversations in a sustained manner will not happen.

Namita Seth Mohta (28:58.446)

And so a lot of our work has been in these settings and in these cancer settings and thinking about how do we put the tools and processes in place to ensure that these conversations can happen. Which is you can start the con-, usually traditionally when I trained, it was this transition of I can't do anything else for you. I'm going to refer you to palliative care in hospice. That is no longer the model. The model is let's have conversations more, better, earlier. Lockstep with our curative goals to at every moment make sure that what we are doing diagnostically and therapeutically is aligned and then make decisions from there because that can also change over a patient's journey from diagnosis to 18 months later after four surgeries and six rounds of chemo.

Wayne Jonas, MD (29:59.433)

Cancer is about a journey, okay, in those areas. And along that journey, not only is the disease serious, very often, but the treatments. And balancing that in a shared decision-making process requires both for decisions on the treatment as well as the management of the cancer that the person actually be brought back into the center.

Wayne Jonas, MD (30:28.585)

And so finding out what their goals are and aligning the plan to make sure those are happening is a key. And so having these kinds of conversations, I think, you know, routinely, regularly along that entire journey and the cancer journey is there. And it can help you contextualize the data that patients often come in with where they look at the prognosis, they've looked it up already on the internet, they've talked to somebody about it

and they think that applies to them. And this conversation can talk about where does data really apply and where do individuals fit in the long bell curve of these areas and how can we make wherever you fit in that a better journey for you functionally in terms of wellbeing and your own experience along the way and sort of not to take your eye off of the treatment of the disease. Yes, we're going to do that

but not to have that substitute for the care of the patient. I mean, this is in the long, long tradition within medicine, as you know, back even before Osler, but certainly with Osler and more modern times, Peabody, Castle, Eric Castle and his, you know, seminal book in this, Slone from Harvard there

and James Mold, who's written a book about goal-oriented care in medicine in general. And then the tools we've developed here around the HOPE Note, the healing-oriented practices and putting what matters in the center of the conversation, you know, at any time. So this is a wonderful tool. It's been a wonderful conversation in those areas.

How do people find out more about it? How do they get access to it if they can? Any next steps, any recommendations that you might have for those listening?

Namita Seth Mohta (32:26.83)

Before I answer that logistical fact, let me take a step back and say two things. One is, as you Wayne and I have bonded over, is that we are optimists. I truly believe that it's about us building on foundations that are strong.

And so to me, the Serious Illness Care Program, the work that we're doing at Ariadne, the work that you are leading is about being better. And that pursuit of optimistically being better is what drives all of our work. And I encourage all of our listeners to, when you go download the guide or learn about the Serious Illness Care Program, come at it from that lens. And the second point I would make is about trust.

So as we're talking about all of these tools and all of this focus on the patient, which we all, there's nothing to argue with there. Of course we want to all provide patient-centered care. It is about a North Star of building trust. And in my mind, all of these tools I crosswalk with, is this going to improve trust? Is it going to improve the relationship between a care provider and their patient? And with that lens,

that is the work that we are doing at Ariadne and specifically in the Serious Illness Care Program. And I would encourage all of you to please, the most straightforward way is to visit our website, ariadnelabs.com. There's a button there that says the Serious Illness Care Program. And it will very easily then lead you to another click. Enable technology. It will lead you to another click of a button which comes to our team, which takes all of your...

inquiries very seriously. And we'd love to have a conversation to not only share more about what we are doing, but also to learn from you. Stacy Downey, our Associate Program Director, is always reminding us that we are a learning organization and that we do not do our work in a bubble. And so our goal is to also continue to learn from the field about...

Namita Seth Mohta (34:41.838)

what the field needs so that we can develop our tools and our ideas and our research and our community appropriately.

Wayne Jonas, MD (34:50.569)

Well, that's wonderful. Thank you. We will put that in the podcast notes so people can access that and go there, get more information in those areas. You know, these are the only way to actually deal with difficult situations, as often said, is to go through them. And the way trust develops is that you go through them. And these are difficult things for both the clinicians and the patients. They just don't want to do it.

But if you go there and you do it with the positive intent and tools that allow you to do that, in my experience, patients always come back or usually almost always come back and say, boy, I'm sure glad that you had that conversation with me. That really made a difference in my life. But you can only do it when you go through the difficult times. And this process and this tool really helps you do it. So thank you so much for what you're doing.

Namita Seth Mohta (35:46.83)

Thank you.

Wayne Jonas, MD (35:47.881)

Thank you for bringing this concept and these practical things into healthcare and into medicine. And I encourage everybody to take a look at them and begin to implement them in their own settings. Okay, take care.

Namita Seth Mohta (36:01.102)

Thank you.