This conversation explores various aspects of palliative care, including misconceptions, suitable ailments, the role of family caregivers, and the impact of language and storytelling. Dr. Alexis Drutchas shares her journey into palliative care and discusses the importance of effective communication in improving patient care. The Continuum Project, an organization focused on improving serious illness communication, is also highlighted. The conversation emphasizes the need for training healthcare professionals in language and communication to provide respectful and supportive care to patients and caregivers. In this conversation, Dr. Alexis Drutchas discusses the topics of bias and stigma in medicine, the importance of allowing the path to be meandering, and choosing a fulfilling career path.
- Palliative care is often misunderstood, and there is a need to educate patients and caregivers about its focus on quality of life alongside ongoing treatment.
- Palliative care is suitable for a wide range of serious illnesses, including cancer, COPD, heart failure, and neurologic conditions.
- Family caregivers play a crucial role in the well-being of patients facing serious illness, and their needs should be acknowledged and supported.
- Effective communication, including storytelling and reflective writing, can foster deeper connections and improve the quality of care in palliative settings.
- Language and labeling in healthcare can have a significant impact on patients and caregivers, and efforts should be made to use respectful and supportive language. There is a need for more work to be done in the medical world to address bias, labeling, words, and stigma.
- It is important to allow oneself to be curious and open to new experiences, even if it means deviating from a predetermined path.
- Choosing a career path that aligns with one's values and brings fulfillment is crucial to avoiding burnout and finding long-term satisfaction.
00:00 Introduction and Misconceptions about Palliative Care
03:06 Suitable Ailments for Palliative Care
06:19 Dr. Drutchas' Journey into Palliative Care
09:54 Encouraging More People to Enter the Field of Palliative Care
13:23 The Role of Family Caregivers in Palliative Care
17:42 The Impact of Palliative Care on Family Caregivers
23:28 The Continuum Project and Improving Serious Illness Communication
25:39 The Elements of Effective Communication in Palliative Care
27:19 Incorporating Storytelling in Caregiving
30:57 The Significance of Writing and Storytelling
35:29 The Impact of Language and Labeling in Caregiving
39:17 The Role of Language in the Patient's Journey
43:13 Training Healthcare Professionals in Language and Communication
44:28 Bias and Stigma in Medicine
45:50 Allowing the Path to be Meandering
48:18 Choosing a Fulfilling Path
Full Episode Transcript:
Neal Shah (CareYaya Health Technologies) (00:02.463)
All right, so yeah, welcome to the Future of Caregiving. And today we're very pleased and excited to welcome Dr. Alexis Drutchas, distinguished palliative care physician at Mass General Hospital and an instructor of medicine at Harvard Medical School. So Dr. Drutchas, maybe we'll just kick it off. What are the most surprising things that somebody may not be aware of when they enter?
either as a patient or a family caregiver for somebody on palliative care.
Alexis Drutchas (00:34.335)
Well, thanks, Neal. I'm excited to be here. Thanks for the opportunity to talk with all of you. I think a big myth that gets busted that I think is surprising for patients and caregivers or family members, however they think of themselves, is that I think there's this common misconception that someone sort of going palliative, quote unquote, without really understanding what that means. And I think a really helpful reframe and something that surprises people.
very often is that palliative care is a medical specialty that works with those living with serious illness and their families that focuses on quality of life and what matters most alongside treatments for whatever illness someone might have, whether it be cancer or COPD or heart failure or dementia. It isn't something that you're not giving up something to have palliative care, you're not going palliative. It's really about focusing on someone's quality of life and having the best number of good days possible alongside getting ongoing treatment. When patients are at a place that there either isn't any more treatment-directed therapies or those treatment approaches are causing more harm than benefit, you know, that their quality of life is no longer acceptable going along the treatment path, that's really when someone would consider focusing on comfort, which would then be a transition to hospice. So I think...
What I see is many family members and patients saying, wow, I wish I had access this sooner. And that their quality of life, their symptom management, and the emotional burden of feeling like they're holding all of these worries and questions alone can really feel relieved. And I think that access, that there's a real barrier to that access because of people's fear about what they might be giving up or thinking that it means they're giving up if they access palliative care.
Neal Shah (CareYaya Health Technologies) (01:58.292)
Alexis Drutchas (02:27.799)
I think we're slowly evolving as a society as more, especially with COVID, and especially as more authors out there like Atul Gawande and many of my colleagues who are writers are talking more openly about illness and quality of life and end of life care and all of that. I think this is changing, but I still think we have a long way to go with that narrative of what palliative is thought to be versus what it actually is.
Neal Shah (CareYaya Health Technologies) (02:54.807)
Thanks, actually, very informative answer, Dr. Drutchas. One quick question on that, actually, as a follow-up, would be, you mentioned several different ailments, including cancer, COPD, dementia, and other. I think that may be surprising to some of the listeners and informative. Can you discuss some of the more common and also not so common ailments that people find are suitable for palliative care?
Alexis Drutchas (03:06.633)
Alexis Drutchas (03:22.247)
Yeah, I think that's a great question. I think serious illness is such a broad bubble. We often think of palliative care as being a medical specialty that can help those with serious illness with kind of three big buckets of things. One would be symptom management, so symptoms of an illness, like someone might have shortness of breath, lower extremity edema, anxiety from feeling short of breath in situations where their lungs or heart are impacted.
There's also symptoms of treatment. You know, those going through cancer treatments can be nauseous and fatigued and have pain. So there's symptom management of an illness, of the treatments. There's also the emotional symptoms of having serious illness. And then there's the overall medical decision-making that, you know, that patients and their families are facing, which is there's often forks in the road and we provide a lot of support in thinking about what's most important and how do we align treatments. And so when you think about palliative care,
through that lens, so many illnesses then would make sense to access that kind of care. Anything from, I think the traditional one and where palliative care really still gets a lot of its funding is through oncology. I think it's where our minds often go when we think about what serious illness is and who might need palliative care. And of course that's true. But again, I think any more...
chronic and progressive illness that we know will have side effects that we know will eventually get worse. I think any of those illnesses, that's a very large bubble, but families and patients could really benefit. So things like multiple sclerosis, those with more severe lupus, like autoimmune illnesses, rheumatologic issues, neurologic issues, ALS, like there are so many serious illnesses out there that I think...
we're still in this place that people sort of kind of walk along in the muck thinking, could this be better? I keep showing up to my specialty appointments, I might get treatment for this thing, but actually my quality of life is suffering. And I think palliative care is something that could be accessed much earlier than it is. Of course, then we have got the problem of there are not enough palliative care physicians, or I don't mean physicians, palliative care clinicians, because we have tremendous interprofessional support as a specialty out there.
Alexis Drutchas (05:44.275)
for every single person with a serious illness, which really speaks to the need to train everyone in primary palliative care skills. But I do think there is an overwhelming need in the community based on how much sort of critical chronic illnesses out there and how late many are accessing palliative care.
Neal Shah (CareYaya Health Technologies) (05:52.799)
Nirvana Tari (06:03.382)
That is super insightful, Dr. Drutchas. Thank you for that answer. I have to ask now since I just gotta know how you got into palliative care. So can you share a little bit briefly about maybe your journey into palliative care and why you chose the specialty?
Alexis Drutchas (06:19.399)
Yeah, I'm happy to. I think it was a very meandering journey, not to go back much too far, but I had pretty significant surgery as a kid on my hand for multiple summers at Boston Children's Hospital. I have a vascular malformation on my hand that was extremely debilitating and painful and had two different 13-hour surgeries as a young child. And that really transformed me. I think my mom and I both remember me looking to her the next day after surgery saying,
I want to be with people during their hardest times. And I was nine years old. And I think that feeling of, has really stuck with me and I think was a big driver for me to go into medicine. I went into family medicine because I really loved OB and seeing kids and seeing the whole family and became a primary care physician at Fenway Health focusing on LGBTQ health. And what happened when I was there is I started to worry that as a primary care doc, I was really
Neal Shah (CareYaya Health Technologies) (06:53.872)
Alexis Drutchas (07:17.107)
band-aiding issues without understanding what people's goals and values were. Why were we treating these in the first place? What was most important to them? And how could I help them in their decision-making based on those goals and values? I felt within me a real lack of ability to communicate about these things and I wanted more training. I think alongside that, that next year, when I was thinking about this, my grandmother attempted suicide.
And I was really impacted by the ways in which the medical team communicated with us with a very sort of biased judgmental approach. And I saw the impact, the negative impact that had on her and my family. And all of that together really led me to apply to a palliative care fellowship, which is a yearlong training program. I participated in the Harvard program and after that, stayed at Mass General Hospital as an inpatient palliative care clinician.
So I think it was a combination of my own life experiences and then being a physician and seeing sort of ways in which I wanted to grow that I needed more training to access.
Nirvana Tari (08:23.394)
Thank you so much for sharing that. I mean, it's beautiful to see that you turned all of this adversity into helping other people and making such an impact on all these people's lives. So thank you for all of your service and your hard work in this field. It can definitely be difficult. And I also love that palliative care is so much about holistic medicine and treating the person as a whole and not just as a group of symptoms, which can often be done in the medical system and primary care physicians here. So it's really great and refreshing
that treating the person as a whole is actually something that's being done and something that's so important.
Alexis Drutchas (09:00.771)
I really appreciate you saying that. And I think that's true. And I think at the core of everyone that goes into medicine, they want to treat the whole person. I don't think anyone goes in thinking, I only want to treat their heart. I only want to treat their femur. But I think our medical specialty and the way we super specialize and the way the insurance, the insurance, I think, the kind of organizations force people to see patients so quickly. I think it's really taken away that ability to.
to see someone's full personhood and to have the time to really explore and access that level of empathy. I think we all come into medicine with.
Nirvana Tari (09:39.582)
Absolutely. Yeah, so earlier you mentioned that there's not enough palliative care clinicians, and we're just wondering, how can we encourage more people to enter the field? And I guess, really, how big is the need?
Alexis Drutchas (09:54.715)
I think that's a really good question. I think there's kind of two answers to this, which is palliative care is still a newer specialty in the U.S. It doesn't mean that individuals weren't practicing with the principles of palliative care, but as a medical specialty that those can be trained in and then board certified in, it's still a fairly new specialty. And I think interest is growing. I think the trouble is, and what I think many of us would believe is that palliative care skills are just good medicine. The goal in the future would be that every clinician out there has these skills to elicit people's goals and values, to treat symptoms, to communicate with empathy, that all of these would be inherent in just good medicine and that everyone would not only have the training, but the time to give that to each of our patients. And so I think the real trouble is that our medical system, our huge organizations, our insurance organizations are really taking away some of that time and burnout is real and all of our paperwork and all of those various things that we could talk an hour about that are leading to the stressors on the medical field. So I think that question is interesting because I would love to see more people get into palliative care and our whole medical field is sort of suffering and is not meeting the demands of our community already. And so having more and more people become subspecialists is also not necessarily the broad public health view that we need. So I think the ideal answer is that we really go upstream and think about, and I do think medical schools, for example,
Harvard Medical School has a great communication curriculum and thinking about palliative care skills in geriatric medicine early on in medical education. I name them only because that's in my back door as a faculty member there. But thinking about early communication skills, early symptom management skills, and how do you bring those skills into your specialty as a primary care doctor, as a cardiologist, as a neurologist, and then if everyone is practicing up to that level.
Alexis Drutchas (12:07.187)
How do you then help people access more specialized palliative care when you've exceeded what their clinicians can offer? So I think I think that I'm holding both things the want for more people to come into palliative care. And I think certainly there is tremendous interest now after covid although covid is ongoing. And also I think we need these skills to be taught upstream to all to all interprofessional clinicians or else we're really going to keep on having these silos and having gaps in care.
Neal Shah (CareYaya Health Technologies) (12:40.055)
Oh, fascinating. Yeah, thanks for sharing that. Then jumping back and forth a little bit to the patient and family perspective, you know, kind of Dr. Drutchas, could you speak a little bit about the situation of the family that's preparing to enter palliative care, you know, in terms of how should the you know, I guess, what have you seen from a family caregiver's perspective of what are things they should know, even just kind of a bigger picture? How important is the family caregiver and their impact on the well-being of the patients facing serious illness. Can you talk about that a little bit and then maybe just kind of riff a little bit on how family caregivers may be better supported or better integrated into the part of the care process?
Alexis Drutchas (13:23.695)
Mm-hmm. So what is the role of the family caregiver? First off, I think, I think having been a family caregiver myself for both my grandmother again after her after she left the hospital after her suicide attempt to my sister also had a spontaneous coronary artery dissection years ago and went into very sudden cardiogenic shock and lives with heart failure now. And so for the month and months after I was sort of alongside my parents, of course, her.
Nirvana Tari (13:33.792)
Sure, so let me double check and see just, okay.
Nirvana Tari (13:45.166)
Okay, well I'm at the office today, so I might not be able to, yeah, okay. Okay, that sounds good, yeah, please Nancy. Yeah, thanks, I'll text you too, all right, bye.
Alexis Drutchas (13:52.967)
So I have tremendous respect and solidarity and understanding with the physical stressors, the emotional stressor of being a family caregiver. So I think it really should be named how much patients in the medical system depend on caregivers. I think there is the emotional burden that family caregivers hold of watching their loved one have losses.
lose independence, lose strength, lose physical abilities, lose health. I think there's a great emotional toll and a way that we're asking caregivers to hold that. And then I think there's all of the physical demands for the caregivers too, medications, food, mobility, transportation. I mean, that's a huge one. And then the other bucket is the financial portion of it. It is expensive to be out of the workforce to provide care.
or to navigate, you know, how to get enough family and friends around to provide, especially those who need 24-7 support. So I think we cannot overstate at all the importance of the caregiver and how much they allow their loved ones to remain at home if that's something that they're able to do. So I think above and beyond, I have tremendous respect and also a certain sense of
sort of unity and solidarity with those who are dealing with loved ones who have become suddenly or progressively sick over time. So I think with that sort of in the background, I think there's so many ways in which the caregiver is important to the medical team and that we can also better integrate caregivers into the medical team. I think first and foremost, caregivers have that.
direct witnessing and view of how their loved one is doing. I think so often our patients sort of under report symptoms. They don't necessarily remember what medications have helped or not helped. Have they been eating? Have they been losing weight? What side effects have they had? How has their mood been? Have they been in bed all day? All of these sort of nuances that patients might not remember to report or might not think is important or they're under reporting because they're worried. I think...
Alexis Drutchas (16:13.587)
caregivers can give voice to that. So there's a way in which those details and the need to hold both the individual, the patient's narrative, but also the loved one's narrative is so important. I think coming in, being an advocate, having those notes written down, having those questions written down, patients are always apologizing for one word question. And I think those are essential and it's an essential part of understanding what's really going on in the home. What are they really seeing?
And I think we can do a much better job. I think in a way telehealth is helping with some of that because it is allowing folks to have their family and caregivers at appointments and ask those questions and share what they're seeing at home. And I think we can do a better job too of making sure that we're hearing that part of it. I think so many appointments are so quick that many clinicians need to.
out of necessity sort of be in and out. So slowing down, asking their perspective. I always tell patients when their families are at the bedside, you know, I'm gonna be looking to you tomorrow to tell me how did your family members seem 45 minutes after that pain medication? You know, what do they remember of our conversation? So I think telling them ways in which they can be helpful too is another way that I think we can better incorporate caregivers into their.
and into our medical teams and into their loved ones care.
Nirvana Tari (17:42.05)
That's great. Thank you. No, you go ahead.
Neal Shah (CareYaya Health Technologies) (17:43.111)
And one follow up, oh sorry again, the wrong person. Oh, I was gonna say one follow up quick question on that I think that you alluded to was around kind of like the role of the family caregiver and potentially the strain or the, you know, kind of like burden that they face in taking, shepherding someone through the palliative care and serious illness process. I guess, could you elaborate on that? Maybe just a little more around, you know, that's something we've been kind of wondering is that, you know, while the person being treated is the patient on palliative care or facing serious illness,
Alexis Drutchas (17:57.364)
Neal Shah (CareYaya Health Technologies) (18:12.775)
I feel like there's an unseen or unspoken thing, which is the mental health and physical health potential toll on the family caregiver. And I guess, do you see that in your practice? And yeah, how prevalent is that? And what do you think can be done to help alleviate that it's almost two people going through the illness or more, not just one person?
Alexis Drutchas (18:20.691)
Alexis Drutchas (18:32.655)
Mm hmm. I think that I think that so was said, Neal, and I think, you know, one thing I've heard many people say, at least in the oncology world is when one person is diagnosed with cancer, the whole family is diagnosed with cancer. And I think that's true of every serious illness. I can say when my sister was diagnosed with heart failure, there's a way in which we all were, you know, and I think we have to honor the fact that it's the individual's body going through this experience, they're, of course, suffering from their own
emotional toll their own losses, but caregivers, family members are seeing that in parallel and witnessing in a different way. And I think, again, we can't overstate how tremendous the impact is of that. I think one, being able to name that, especially in medical appointments, just that quick affirmation, I think can go a long way of saying to caregivers and families, I see how much work you're doing caring for your mom.
Neal Shah (CareYaya Health Technologies) (19:24.501)
Alexis Drutchas (19:30.299)
I can only imagine how hard this is, you know, watching your brother not be able to leave the house without a wheelchair now. Like I think there's a way in which just naming and affirming someone's experience can be tremendously healing, like just to be seen, which seems so basic, but I think often in these quick appointments, we're missing that. And I think we could do great work by just affirming one another and...
showing how much we're seeing their work and how hard it must be. I think that would go a long way. I think the other question is, of course there is a mental health toll, especially if it's someone, I have so many patients who it's their spouse of 50 years that's now at the end of life, or all of the sudden they've had a stroke and they're no longer going to come home. I mean, that's significant, that has significant impact, at least in the hospital.
We have wonderful spiritual care and social work colleagues who again, palliative care is a very interprofessional specialty. So we often round with or see patients with our spiritual care colleagues or chaplain colleagues or social work colleagues. And I think we have to build those interprofessional resources to provide the support that patients and families need to check in, to come back, to help patients and families grieve. So I think building up interprofessional teams
both in and outside of the hospital is huge. I can't speak as much to what is available just for community members, but I think as you think about Karyaya, of course, thinking about social work support, chaplaincy support, like behavioral health groups would be, I think would go a long way to have people feel in community and not feel like they're alone. I think it could go a long way.
I was thinking a little bit more just to circle back for a second about what you said with what can caregivers do to integrate more into the team or how can they plan when they are accessing palliative care. And it came to mind that I actually think one huge thing that family members can do is sort of allow access to palliative care. I think so often...
Alexis Drutchas (21:49.115)
because of this fear of loss, the fear of death, the fear of what may come in the future, family members are actually the ones really reticent to access something like palliative care. Of course, patients have that experience, of course, but I think often there are dynamics at play of someone saying, you know, grandma, I don't want you to give up, you know, or we're not, you know, mom doesn't want to talk about that yet. That's coming more from the family member and their fear.
Neal Shah (CareYaya Health Technologies) (21:59.371)
Nirvana Tari (22:12.343)
Alexis Drutchas (22:19.107)
And I think we could go a long way to think about, you know, what could palliative care offer alongside someone's treatment and how might that actually relieve some of the burden and create space to talk about some of those anxieties and what lays ahead so people aren't so alone in those fears. Just because we're not accessing the care doesn't mean the fears aren't present and the worries and the what ifs. So I think sometimes what families could do is sort of...
Nirvana Tari (22:42.038)
Alexis Drutchas (22:46.415)
allow that exploration and sort of help with that access to care as a first step.
Nirvana Tari (22:51.374)
It's so important to both validate and empower both the family caregiver and the person receiving the care, of course, because that's there. Absolutely going through this whole process as a team. And it's really important to make sure that everybody feels like they're a part of that team. I have to ask your role as the education and curriculum development co lead for the Mass General Hospital continuum project is extremely fascinating. What led you to this role.
Alexis Drutchas (22:57.076)
Nirvana Tari (23:23.684)
and how does it contribute to improving serious illness?
Alexis Drutchas (23:28.051)
Thanks for that Nirvana. That's a great question. Just so that folks know what the Continuum Project is, it's an organization through Mass General that was started by previous MGH president, Peter Slavin, that really the task was to improve serious illness communication, sort of hospital organization wide, and it uses the framework of serious illness communication.
from Atul Gawande's Ariadne Labs that is affiliated with Brigham Hospital. And so what we teach is a communication framework. It's a serious illness conversation. It's ever evolving to really make sure that we're able to engage with diverse patients of all different backgrounds and illnesses.
Neal Shah (CareYaya Health Technologies) (24:06.794)
Alexis Drutchas (24:15.043)
And so I got involved again, to go back to why I went into palliative care in the first place. I saw a real need to improve our communication and our ability to understand our patients' goals and values, their families' goals and values, what's most important to them, and to do that with real empathy and curiosity. And I think this is such a tremendous framework to help people across specialties and across disciplines have a way to communicate about these hard things. I think often we get we get stuck in these conversations.
when we're faced with, we don't wanna hurt a patient's feelings, we don't wanna make them sad, we're tasked as at least as physicians to make people feel better, what does it mean if there's no more treatment options? So all of these conversations are emotional, they can be sticky, and I think having a framework is so helpful to help us all have these conversations earlier and more often. So that's why I got involved. And so we teach this framework organization wide across,
Nirvana Tari (25:06.094)
Absolutely. Yeah, absolutely.
Alexis Drutchas (25:15.023)
across disciplines. And we've trained over 2,000 clinicians over the past year. So it's really growing and I think having tremendous impact in our organization across the board.
Neal Shah (CareYaya Health Technologies) (25:21.004)
Nirvana Tari (25:26.382)
That's great. Now, when teaching these serious illness communications to clinicians across the Mass General Hospital, what specific elements do you emphasize for effective communication and palliative care?
Alexis Drutchas (25:39.127)
I think that's a really great question. So the framework focuses on, again, it's really eliciting patients' goals and values. I think the first step is, what does our patient understand of their health right now is such a big one. I think we can be at very different places with what patients and their families think is going on versus maybe more of the reality of the situation. So we do some work with assessing our patients and their family's understanding and getting a sense of what they're hoping for and what they're worried about.
I think those are big buckets of the conversation. Another big topic that we address is, given where their illness is at right now, what's most important to them? I think that's the biggest thing. I think often in medicine, this idea of longevity is the thing that's stressed, and we don't often focus on quality of life and what's an acceptable quality of life. And this conversation is really hoping to get at, what's most important to our patients given where they're at now? Where are they finding strength?
How much do their family and loved ones know? And what recommendation might we make given all of this to move their care forward? So I think those are big buckets that the conversation stresses. And I think it's extremely empowering to help patients have a voice in their care to really express some of their core values so that we can support their care decisions based on what's most important to them.
Nirvana Tari (26:59.86)
Nirvana Tari (27:08.402)
Yeah. Now, do you think that these elements could possibly be translated into the caregiving setting to make caregivers more informed and confident in their role?
Alexis Drutchas (27:19.123)
I think 100% and the Continuum Project does have an engagement piece of it. So some of this training is done in the community to patients and families in clinical settings to help patients and families get a sense of how to start these conversations about what's most important. Often what we find, at least because I do inpatient hospital work, is that it is, it is a tough time to have these conversations when we are in fight and flight mode.
after we've heard serious news or when a family member is critically ill. And we're trying to quickly understand what's most important to someone or, you know, to a patient or to a family member's loved one to help them make medical decisions in real time. And I think what caregivers can do, which would, which would really help. And I think benefit their loved one is to think about having some of these conversations upstream.
Nirvana Tari (27:50.724)
Alexis Drutchas (28:13.127)
You know, a lot of, and it doesn't need to be as scary as talking about what we're doing tomorrow. It can be, you know, can we think of a time that things might get worse? And in that time, what might most be important? You know, what functions are so valuable that it wouldn't be an acceptable quality of life to live without them? You know, I think we're often faced with situations of thinking about very large interventions, like a feeding tube.
which would mean someone's not eating anymore. A trachea, you know, I had a patient who had a tracheostomy and her favorite thing was to sing in her church's choir. She wouldn't be able to do that anymore. So are there ways in which family members can talk when things aren't heated, when people are stable, when they're well enough to have these conversations to think about what's an acceptable quality of life? What gives your life meaning and joy? And if you weren't able to access those things anymore, what decisions might I make?
for you if you weren't able to make those for yourself. I think that would be so tremendously helpful and take a lot of the burden off the caregiver in the future because then we would be able to speak to what the patient would have wanted rather than the emotion of the caregiver. And we'd be able to lean more on the patient's voice because they had talked about that early.
Nirvana Tari (29:31.522)
Wow, the way you speak about this topic is even calming me down and preparing me for something that's not even out there yet. So it's really lovely to get your insights and hear your thoughts on these topics.
Alexis Drutchas (29:35.272)
I'm going to go to bed.
Alexis Drutchas (29:43.727)
I'm happy to, thanks.
Neal Shah (CareYaya Health Technologies) (29:47.539)
Yeah, actually, you know, on a related but tangential topic, you know, around storytelling, you know, I'm actually really curious, you know, kind of like you had, you know, I think I think we'd read that you're involved in the palliative stories exchange. And you know, it's something the topic is actually close to us and would love to learn a little more about it, because we have been approaching storytelling through kind of like a digital framework of how do we capture a life story of people as they're going through palliative care.
And we've been running a tech innovation project that we just actually got into Harvard Animation Labs to bring this using AI to enable story capture. But I think, you know, we'd love to learn from your perspective, and just kind of a storytelling in general. It's a topic we're very fascinated by. How do you believe storytelling affects the clinician? How do you think storytelling affects the person who's being treated?
How do you think even storytelling affects family caregivers? I guess just kind of the importance of storytelling broadly and how it might contribute to kind of conversation about serious illness care. Yeah, just kind of open-ended question. Yeah, let's talk about storytelling.
Alexis Drutchas (30:57.723)
Thanks, Neal. That's a great question. And I was also thinking about what Nirvana just said and thinking maybe having a calming voice is part of the palliative care training process and is on the board exam. Is her voice calming enough to be a palliative care clinician? I've passed the test you've just told me. So thank you. Number one, number one, I have that. It's helping my toddler right now, so I'm happy for that too. So storytelling. I...
Neal Shah (CareYaya Health Technologies) (31:08.151)
and I'll see you next time.
Neal Shah (CareYaya Health Technologies) (31:14.079)
Nirvana Tari (31:15.57)
Number one question.
Neal Shah (CareYaya Health Technologies) (31:21.047)
Thanks for watching!
Alexis Drutchas (31:26.631)
I co-founded the Palliative Story Exchange years ago, which I just want to name my two other co-founders, Dr. Ricky Leder is a palliative care doctor at Dana-Farber and Rachel Rush is an exceptional social worker, pediatrics palliative care social worker in California. And Ricky and I initially started this right in the height of COVID. We had become, he was a faculty sort of mentor of mine when I was a fellow after leaving my.
my primary care work and we both had a love of stories and writing and wanted to do this sort of in person and then COVID happened and Zoom picked up. And so, you know, it goes without saying, I think for all of us that the initial pandemic had very high levels of loneliness and isolation and tremendous moral distress for us as clinicians in the hospital just witnessing all of this death and people sort of saying goodbye over Zoom. And we thought
you know, we should come together and share stories over Zoom as palliative care colleagues in the Boston area. And rather than giving a topic, we just pose the question, you know, what have you not been able to stop thinking about? And we found that is enough to really light a fire for people to see what am I carrying home with me. And we really emphasize that this is not, you know, these are stories in the way we share. And I can talk a little bit more about our growth. It's
Neal Shah (CareYaya Health Technologies) (32:39.93)
Alexis Drutchas (32:51.871)
they're not patient cases. So we're not there to talk about diagnosis or morbidity or pathophysiology. It's really focused on the resonance of our work into our personhood and our own personhood into our work. And that kind of permeability and the resonance back and forth is really where I think tremendous amount of community is built and meaning is made and affirmation. And so I think there's been tremendous benefit in many ways. I think...
Sharing stories is extremely healing. Not only the act of being able to write it down and share, but we always take time to reflect on the stories as a group. And there's a tremendous amount of healing that I think happens when other individuals are able to say or think, wow, I didn't know anyone else had been going through that. I felt that way too. I think there's a lot of healing and connectivity.
that happens when we connect through stories and the reflections in between stories. And we've since really expanded. We have done palliative story exchanges for Ariadmi Labs, for Memorial Sloan Kettering's World Hospice and Palliative Care Day. And we're actually having an international palliative story exchange next week. So I think this speaks to the fact that there's tremendous interest in hearing one another's stories. And I think what we've seen is it really creates
an incredible sense of community and togetherness and shared meaning. I think though, because it's like, interprofessional stories are shared across people across the world, across different backgrounds. So I think there's a way in which when we engage with storytelling with an open mind, we learn different perspectives. We might start to think differently about something. And I think of course, there's no way that doesn't impact our patient care.
If we see the power of stories amongst clinicians, amongst peers, there's a way in which we might sit with our patient stories. We might be a bit more curious about their story. We might give a little more space and silence. I think there's a, I think it would be interesting to research, but there, I think that there has to be sort of a growing amount of empathy and curiosity and ability to hold space for hard stories when we translate.
Alexis Drutchas (35:12.595)
sort of interprofessional storytelling into our clinical world. And so I think allowing, for example, caregivers to share stories would really have that same sense of meaning and connectivity and really feeling like you're not alone during a really challenging time.
Neal Shah (CareYaya Health Technologies) (35:29.423)
Hmm, that's totally agree with that, you know, so that's great You know, thanks for sharing and then I think more kind of also in the line of you know, kind of Sharing your story and you know through obviously storytelling as well as even writing, you know, I'd love to hear You know, you have a strong background in opinion writing narrative writing You know, can you talk about that a little bit in terms of how significant has writing been for you personally? professionally
How can storytelling be incorporated, not just for education, but like you mentioned, fostering deeper connections within caregiving.
Alexis Drutchas (36:05.443)
Yeah, completely. I have always loved to write and sort of, you know, put it in the backburner in the sense of being pre-med and a biology major and all of that. And then when I got to residency and was doing these long shifts overnight, I started to realize, you know, I need a way to process what I'm seeing. And I saw a little pamphlet for this organization called Frequency Writers at a coffee shop one afternoon when I was at Brown in Providence and signed up and took for years as a resident evening.
Neal Shah (CareYaya Health Technologies) (36:15.552)
Alexis Drutchas (36:34.791)
writing classes, a lot of poetry classes at the time. So I would often show up late and in scrubs and be in these like two to three hour long classes in the evening. And it was so fun and meaningful and really I think helped me access this ability to process through writing and sharing in small groups that I'm so thankful for because it's really been a solve for me. I usually...
Neal Shah (CareYaya Health Technologies) (36:36.689)
Alexis Drutchas (37:01.423)
I usually have a million different ideas in mind and that I'm constantly thinking about how do I incorporate what I'm seeing in my own family, in my work, what does this mean, how can I make meaning from this? I think writing for me has been a tremendous way to find meaning in my work and in my relationships with the work and with family. So I think...
Nirvana Tari (37:27.262)
Alexis Drutchas (37:28.091)
you know, if any caregiver out there is interested, I do think reflective writing is such a tremendous way to process and to share. I think the other important thing I wanna mention is, I think as a writer, or really anyone who's creative, there's a way in which you then approach the world with a writer's eye. I think there's a way in which we just start to see things a bit differently, like what is the story behind that? How did that make me feel? Why did that resonate with me?
I think there's a way in which it might just change our ability to be present and to connect and to make meaning when you're thinking, not necessarily like using a patient's, what their current experience is for a story, but I think it more changes the way you see the world and how you reflect and how you integrate when you're thinking about meaning making through writing. So for me, that's also been really interesting. You know, on my patient census.
If someone says something really profound, I'll jot it down and I'll be pondering it for days later. And for me, that brings a lot of joy and a lot of meaning for me to my work. And I think many caregivers out there, I wonder if they have that same experience.
Nirvana Tari (38:34.242)
Nirvana Tari (38:42.538)
You honestly took the words right out of my mouth. I think that.
Neal Shah (CareYaya Health Technologies) (38:43.391)
That's it. Yeah.
Nirvana Tari (38:47.062)
Yeah, reflective writing is definitely something that's should be done in every field ever because having all those thoughts in your head can get a little confusing and jumbling and being able to look at your thoughts and visualize them can always make things a little bit better. But on that topic of writing and words. I have some questions about language for you. So, I know that the language used in caregiving and medical care can significantly impact the quality of care and support that one receives.
Neal Shah (CareYaya Health Technologies) (38:48.619)
Yeah. I agree.
Alexis Drutchas (39:01.288)
Nirvana Tari (39:17.496)
And I guess kind of what role does it play in the patient's journey? And can you think of any examples of how potentially biased language and labeling of patients and families can negatively impact their care? I know that's a lot.
Alexis Drutchas (39:30.671)
Such a tremendous question, Nirvana. Yeah, it's okay. I think we can unpack, we can unpack at least some of it. And also it could probably be a PhD thesis, but I think, I think this is such an important topic. I think, you know, as a palliative care doctor, my answer of language is everything probably wouldn't surprise anyone. Um, but I think that we hold onto how people make us feel for years to come. And so much of how people make us feel.
Nirvana Tari (39:38.977)
Alexis Drutchas (39:59.631)
especially in the medical world, is based on what people say to us. And so I think there is so much impact of the things that we say that are positively impact people and the things we say that negatively impact people. And of course, that is the core of my work as a palliative care clinician is how do I, how do I be intentional about what I'm saying and how do I intentionally help others to evolve in the way that they're.
communicating. So I think that there is a great deal, I think, to go to your topic of labeling and bias, I think just to unpack a little bit about what that means, I think caregivers and patients are under tremendous stress, and often people come into these roles as a patient, as a caregiver, with trauma as well, trauma from their personal experiences with
structuralized racism, homophobia, transphobia, all of these different things that make it that when we're in a heightened situation like critical illness or progressive illness that we often can be activated much quicker. And we don't always bring our most calm selves to these really difficult times. And I think our medical system has a very low threshold to tolerate that.
I think there's that myth of the good patient, the good family member. And I think in that way, caregivers are in a very precarious situation because I can speak for my own self as a caregiver. So I'll use just we, like we want to advocate for our loved ones. We wanna ask the questions. We wanna say what's on our mind that we're worried about. And also what we're faced with is a medical system that is-
trying to get better is evolving, but still, I think goes to these quick judgments and labels of people just to sort of categorize them as a way to quickly sort of wrap things up. So I think someone might be labeled as difficult, for example. There's so many other synonyms for that.
Alexis Drutchas (42:11.107)
And I think that does a lot of disservice to patients because patients and families feel that. And then rapport and trust is broken. So I think that language is really everything and coming in to our interactions with caregivers and caregivers with teams, with curiosity and with empathy is so, so important. I think for me, I think again,
Nirvana Tari (42:33.934)
Alexis Drutchas (42:37.855)
Caregivers in that way are in this precarious situation because you don't want them to be worried all the time about how they'll be perceived. And also we always have to be aware of how we'll be perceived. So it's this like duality there of holding that is so hard, especially when you're in the emotional role of being a caregiver. I wish I had a quick fix for that. I do wonder about caregivers naming that sometimes out loud to their teams, might be a really interesting and cool tactic as a way to.
Nirvana Tari (42:42.914)
Alexis Drutchas (43:07.771)
sometimes work against that quick labeling and kind of stigmatization that can happen.
Nirvana Tari (43:13.13)
Yeah, so do you, I guess, think that there can be training of healthcare professionals done to, so that they can be better equipped to use language that's not only medically accurate, but also respectful and supportive of the caregivers? Or do you think that's something that you just kind of learn as you go through the field?
Alexis Drutchas (43:32.091)
No, I think there is tremendous work being done with trying to improve students and clinicians' ability to step back from a situation to not label or use bias language. So for example, like implicit bias training is so much more common now than it was even when I was a medical student, training that students and fellows and attendings are going through. So I think...
you know, labeling and bias really can go hand in hand. So I don't think the onus should be on the patient or caregiver to fix this at all. I do think it is the medical system's job to do better and to train and have these conversations and to constantly try to grow. And also I think it's important for caregivers and families to also have their eyes open to what dynamics are at play. So that if needed, they can be sort of
named or have a conversation about, but also knowing that there's a lot of power dynamics at play often, and often people don't feel empowered to name those or have those conversations. So I realize I'm opening up a box of a very broad topic here, but I think there's a lot of work to be done and that work is starting to be done in the medical world about bias and labeling and words and stigma and all of that. And we have a long way to go.
Nirvana Tari (44:53.902)
That's definitely very refreshing to hear. Any other final thoughts or things that you... Oh, sorry, Neal, you go ahead.
Neal Shah (CareYaya Health Technologies) (44:59.172)
Neal Shah (CareYaya Health Technologies) (45:03.675)
No, I think, yeah, same. I think I was gonna say, yeah, final thoughts. And I was just gonna say, frankly, I think Dr. Dratchis, you're probably one of the most fascinating people we've had on the show. I think from just like your overall persona, like the thoughtful approach of the work, unique life story, the eclectic interests, I think that such as like writing, storytelling, poetry, I just, yeah, any final thoughts or even really any advice for...
Nirvana Tari (45:16.898)
Neal Shah (CareYaya Health Technologies) (45:31.003)
a young person today. We have a lot of students across America who want to be like you one day. So today's aspiring clinicians who might be college students who are listening to this and thinking, okay, I want to follow in your footsteps. What would you suggest?
Alexis Drutchas (45:50.687)
Wow, that's a high honor. Never did I think as a medical student, I might turn into someone that someone wants to be like. So I greatly appreciate you saying that. I think that, I think the one piece of advice I would have is to let the path to be meandering and allow yourself to be curious about your own experience. I think there's a way in which.
Nirvana Tari (45:58.485)
Alexis Drutchas (46:16.787)
The person who goes into medical school, I think there is so much competition and stress and workload that we feel like we need to have the next steps figured out. I got into medical school here, I wanna train in this, then I wanna specialize in this, and we sort of attach onto that. And I think many don't allow for an evolution in themselves to see, am I still enjoying this? Is this...
Like lighting the fire is this the threat I wanna keep following. What gives me meaning? What am I good at? To all of those things that need to connect. And I wish for so many that we allowed the path to be meandering a bit more and to not feel like we need to get it figured out. I took time off after college to teach snowboarding in Vail and then went to medical school.
I, looking back, would have taken more time. So I think, and then I had a career in family medicine and then switched over to palliative care. So I think many would have said to me, you'll never go back to training, you need to do it now, you're never going to do it later. That wasn't my experience. Doing it later is the thing that gave it meaning. And I would love to impart that, like allow yourself to follow and be curious and not just attach onto something and.
Neal Shah (CareYaya Health Technologies) (47:08.823)
Nirvana Tari (47:15.935)
Alexis Drutchas (47:35.375)
and feel like you are pressured to follow that through if it's no longer the thing that is getting you up in the morning.
Nirvana Tari (47:42.934)
You know, that is so beautifully well said as medical students. There's just a lot of pressure to stick to this timeline and get things done. Like I move on to the next step and do the next thing and do the next thing. And a lot of there's not a lot of room for wiggling. And so it's really refreshing and wonderful to hear you say that because they I feel like a lot of students need to hear this and need to know that the world is their oyster and it's okay to stray off the path a little bit as long as you kind of like have your eye on the prize and know what you're aiming for.
Alexis Drutchas (47:51.684)
Alexis Drutchas (47:57.021)
Alexis Drutchas (48:03.205)
Nirvana Tari (48:12.928)
of your wonderful insights. It's been truly, truly a fantastic experience getting to hear more about you.
Alexis Drutchas (48:18.595)
Yeah, I'm so, I'm so, so happy to be here. I think, you know, as a palliative care clinician, and as someone who saw my sister go from well to not well within a matter of minutes, there's a way in which I see how fragile life is. And why should any of us who have the privilege to make choice, not everyone has the privilege to make choice, but if we do have the privilege to make choice, why go down the road that's not fulfilling, we're going to end up burning out and leaving medicine.
Neal Shah (CareYaya Health Technologies) (48:18.995)
Yeah, this was awesome.
Nirvana Tari (48:46.338)
Alexis Drutchas (48:48.027)
So allow yourself to wiggle and make your own path and figure out what works for you, not just what the system says should work.
Nirvana Tari (48:56.838)
Yeah, I feel like we could have a whole other podcast on burnout and just how difficult it can be to be a part of this field.
Alexis Drutchas (49:04.163)
Yeah, completely. Well, this was so lovely. Thanks for the opportunity and truly thank you for the good work you're doing.
Neal Shah (CareYaya Health Technologies) (49:08.031)
Yeah, well, that was...
Neal Shah (CareYaya Health Technologies) (49:13.311)
Yeah, that was wonderful. So yeah, Dr. Alexis Drutchas amazing conversation learned a ton. And I think tons of people listening will learn everything from family caregivers or patients going through value of care to aspiring clinicians will be inspired, I think by a lot of things you said. So thank you so much for taking the time. It was a wonderful conversation.
Alexis Drutchas (49:34.351)
Yeah, thank you for the time.
Nirvana Tari (49:35.498)
It was absolutely lovely getting to talk to you, Alexis. Thank you so much. Of course, thank you.
Neal Shah (CareYaya Health Technologies) (49:37.399)
Thanks. Yeah. Thanks, Alexis. Thanks, Alexis. Have a great day. See ya. Bye.
Alexis Drutchas (49:39.027)
Thank you, Neal. Thank you, Nirvana. Thanks. Yeah, take care.
Alexis Drutchas (49:47.625)
Nirvana Tari (49:47.842)
Bye, thank you.