Episode #23 of the Charged podcast
About the Episode
When Vicki Jackson, MD, MPH, was an internal medicine resident, one particular patient showed her the transformative role that empathy can play in a patient’s life and care. She witnessed how the care team became a surrogate family for this young man who had been diagnosed with advanced HIV. This experience sparked her interest in palliative care and providing specialized support for people with serious illness. In this episode, she discusses her passion for the field and her experience helping patients navigate the uncertainty inherent to facing serious illness.
About the Guest
Vicki A. Jackson, MD, MPH, chief of the Division of Palliative Care and Geriatric Medicine and co-director of the Harvard Medical School Center for Palliative Care, knows well the value of providing the specialized, compassionate support that palliative care gives patients with serious illness.
In her work at Massachusetts General Hospital, Dr. Jackson developed an outpatient care clinic in the Mass General Cancer Center. From the clinic’s inception, she has collaborated with oncologist Jennifer Temel, MD, on research devoted to early intervention for serious illnesses like cancer. Their research has found that integrating palliative care earlier into treatment can not only improve patients’ quality of life, but also extended their lives. She also works to define early intervention palliative care communication strategies for clinicians.
Dr. Jackson previously served as co-chair for an academic leadership training program for junior palliative medicine faculty with the American Academy of Hospice and Palliative Medicine and as co-editor of a series for clinician-educators in the Journal of Palliative Medicine. She has co-authored a book called Living with Cancer, which was published in 2017.
In 2018, she was recognized as the Inaugural incumbent of the Blum Family Endowed Chair in Palliative Care at Mass General.
She earned her MD at the University of Wisconsin Medical School and her MPH at the Harvard T.H. Chan School of Public Health.
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Read full transcript
When Vicki Jackson was an internal medicine resident, there was one particular patient that left a lasting impact. This young man had advanced HIV, and she saw firsthand how the care team became his surrogate family. She learned the importance of listening to patients’ stories and partnering in their care. That experience sparked her interest in palliative care, the specialized care for people with serious illness.
Since coming to Mass General, Vicki has led the development of an outpatient palliative care clinic in Mass General’s Cancer Center. In her work Vicki focuses on providing holistic medical support for patients with serious illnesses at any point in their lives. Her pioneering research is proving the value of early intervention for patients and she is developing communication strategies to help doctors better care for patients with serious illness.
Vicki believes her job is to help her patients live as well as they can for as long as they can. Since 2011 she has served as the Chief of the Palliative Care and Geriatric Medicine Division at Mass General, which is one of the oldest and largest such units in the country.
A: Thank you.
Q: I’m wondering if we can start off with you talking a little bit about what is palliative care.
A: Yeah, so palliative care is a medical subspecialty where we care for patients with serious illness at any stage during their illness, and our goal is to help them live as well as they can, and that is by making sure that their symptoms are in good control, that they’re coping as well as they can, often in the face of uncertainty, which is really difficult, also helping with medical decision making.
I think what we know is that patients come to a place like Mass General because they want cutting edge treatment and care. We also know that living longer isn’t the only goal for people. People want to be able to be a mom and to do the things they love. And so my job is to help partner with the medical team to help make sure that the patient and family are well cared for in all of these other realms.
Q: And I know you have said there was one particular patient who inspired you to enter this field. Can you talk a little bit about that?
A: So, I was an intern and caring for a young man who had HIV and AIDS, and he was young, like in his early 20s, and it wasn’t clear how he had contracted HIV, and he unfortunately because there was such stigma, especially at the time, was estranged from his entire family and community.
And he would come into the hospital, often with severe infections, and would get treatment, and then about midway through the course would leave, and he would just leave the hospital. And it was probably my third time caring for him as an intern and I like, you know, summoned up the courage and said to him, “You know, just out of curiosity, why do you, like, come in to get treatment but then leave before we have finished the treatment?”
And he said, “Come back this afternoon and I’ll tell you.” He said, “I’ll make you a cup of tea.” I said, “Okay.” So, in the morning I would, like, go listen to his lungs and talk with him, dealing with the medical things, and then in the afternoon I would go back and talk with him and he would make me a cup of peppermint tea, and we would talk.
Q: In his hospital room he would make you the tea?
A: In his hospital room. Yup, in his hospital room. And he, what became clear was that there were many of the treatments that he was receiving that felt too burdensome, and he certainly didn’t want to die sooner, but he also didn’t want to live in a way that didn’t feel acceptable to him. And some of the treatments made him feel so terrible it was in his mind worse than death.
And what he shared with me was that he would come into the hospital to get treatment and then get overwhelmed and want to leave, and he would steel himself to say, “I’m going to go home and I’ll just die at home by myself.” And he didn’t have anybody because he was estranged from his family. And then it would get too hard and he’d come back in.
And it was this really important time, you know everyone had sort of named this young man as being what we call in the medical field “noncompliant.” He wasn’t noncompliant at all. He was just really clear about what was important to him and we hadn’t really figured out how to ask him that yet.
And when we talked through what treatments felt okay, what treatments didn’t feel okay, and talked with the larger medical team about how we could make treatments that could help him, easier for him to manage, it opened up a whole new conversation, which was incredibly powerful. And he ended up living another several months. He was actually able to re-engage with his family and be connected with his mom and his sister again, and ended up coming back several months later and dying with us in the hospital. We had become his surrogate family.
And it was a very powerful experience of realizing how all of the medical treatments that we have to offer are amazing and every passing day at a place like MGH we have more and more options, and we have to remember that there is a patient who is deciding whether that feels like it’s worth it or not to them, depending upon how burdensome it is.
And so part of the reason for me that I love this job is we are helping patients get through really burdensome treatments, like bone marrow transplant, where they are likely going to be cured. And so if we can help them feel better to engage in that really aggressive treatment and they have a great outcome that’s fabulous.
Also it’s true if somebody is living in the face of serious illness and we know that time isn’t unlimited for them, maybe they have a prognosis of months to years, how do we help them decide what makes sense? And the thing that I think is really interesting about it is that it’s different for every patient, right?
So, I remember a patient of mine who was, at the same time I had two patients who were young and had the same diagnosis, they both had pancreatic cancer and they both had young children, and the woman said to me, “You know, Vicki, I would eat a monkey’s backside to try to live longer for my son. I want him to know that I tried absolutely every single thing. But I also don’t want to be stupid.”
And so that’s what we did. We helped her make sure that she tried every possible treatment. And even when she was on hospice she was getting incredibly aggressive treatment and still on a clinical trial. At the same time, I had a gentleman who was around her same age, also had young children, and he said to me, “Vicki, only suggest treatments to me that you really think are going to work, because why would I want to feel crummy? I just want to spend time with my kids.”
And so the thing that just is so meaningful to me is that this work that I do is endlessly interesting, because each patient is their own patient and part of their own family with their own goals and values. And my job is to help them express what their goals and values are and then help the medical world translate that into medical treatment that fits who they are and what is important to them.
Q: Yeah, it sounds like you’re sort of a bridge between the patient and the care team and helping them connect almost.
A: I think like we talk about it like being an extra layer of support to the patients, I think the thing that I love about doing this work here at MGH is that the clinicians here care a lot, and they get engaged in this really powerful way. And so what I feel like, there are times that I’m a translator between the two groups. And also that the clinicians, that we are as connected with one another to try to give the best care in these emotionally difficult spaces as possible.
Some of the referring clinicians will say, “When you guys are involved there is somebody else in the deep end of the pool with me.” So, they know that we are on their side trying to help them do this really, really hard thing.
And I would say I think care has gotten only more difficult as there has been more technological advances, because we have so many options, and it’s not always clear what makes sense. And to be able to be part of a team where we can talk that through with the oncologist or the cardiologist and also translate what is important to the patient. You know, what we find is it’s not uncommon that the patients are so connected with their oncologist or cardiologist that they don’t even tell them really what feels most important. Mostly because they’re just so engaged and connected and they don’t want to, they don’t want to disappoint anybody.
Q: Yeah. Going back to that first patient, the young man, as you were talking about it, it struck me that it seems like part of what you were helping him do was manage his fear of what was going to happen, of the unknown.
A: Yes. So, I think a big piece of what we do is help patients manage their death anxiety, understanding what to expect with their illness, understanding what does it mean to live as fully as they can. It’s interesting. From the research that we’ve done we see that patients who see palliative care early in the course of their illness cope differently. They’re more likely to be able to use what we would call sort of adaptive coping mechanisms that help kind of contain that anxiety and help them be able to look at their illness and the likely trajectory like a little more clearly, and then that allows them with support, like that young man didn’t know what other options he had available to him to help support him, either in getting treatment or if he decided to stop treatment.
And I am not invested in what decision they make; I am invested in making sure that I help them actualize that goal, whatever that is. So, I do think it is about helping everyone talk about something that often feels like unthinkable and untalkable for many people, and I think the gift for me in doing this work is it keeps me grounded, right? Like I am really clear it is dumb luck it’s not me in that bed, and there is a way that that is really humbling and, honestly, like beautiful.
Like there is a way that I have these skills that I think I work really hard to try to help patients and families. But at the end of the day, I haven’t died before or lived with a serious illness before, and so there is a way that we’re just two people kind of on this path and that feels really also rewarding.
Q: Do you find often if people start to talk about these things, sort of say the unspeakable, even just that step is powerful?
A: Yes. So, I think part of what we have really, we spend a lot of time thinking about in our world, especially in the outpatient clinic in the Cancer Center, is what is in the Palliative Care syringe. And our field is new enough and young enough that we’re still finding ways to name what it is that we’re actually doing in the room.
And it’s pretty clear we help make sure patients’ symptoms are in good control, we help with medical decision making, but that piece of being able to help people slowly talk about it and back away, slowly talk about it and back away is a really important skill that nobody has had to develop those emotional muscles. We think about it like the safe holding environment where they can talk about hard things and then kind of close it up, put it back in the box, and then go back and like think, “I’m going to crush it with this next treatment.” And awesome, I would love to see that happen. And we have to prepare a little bit, because if that doesn’t happen it is much harder to have these discussions and think about what is important to you when you feel very, very physically ill.
So, to be able to do that over time is really important, and I think helps patients make different decisions about how they want to live their life, I remember a patient of mine, probably 10, 15 years ago, who her kids had graduated from high school, they were all in college, and she had decided she was going to go back and get her PhD, and then she was diagnosed with metastatic lung cancer, and she was like, “Not so sure if I got three years I’m going to be wanting to do a PhD dissertation.”
And so, she made a decision to stop that, but it was really important that she find ways to make meaning. And so we spent a lot of time thinking, “Okay, we’re not sure what the future holds, but how do you want to spend this time and what is important?” And she found a variety of other things that were really meaningful to her, because your goals change.
Q: Do you find that, do you find people have common misconceptions about what palliative care is or isn’t?
A: Yes. So, it’s common that patients and families and even clinicians will confuse it with hospice. So, hospice is a medical insurance benefit that is available to patients either in their home or in a facility if they have a prognosis of six months or less. In most places the patient is forced to stop getting active disease-modifying therapy. In palliative care we see patients regardless of prognosis, even if the goal is cure. Our job is to help focus on quality of life and make sure that patients are doing as well as they can be.
And I think here at MGH we have been really lucky that the clinical teams sort of see that and know that and are really wanting us engaged.
Some of the work we’re doing in bone marrow transplant is really interesting, because that has been an area where in most places nationally palliative care has not been engaged at all, because there is such a stigma—“we’re going for cure.” And if you think about it, it makes a ton of sense, like in bone marrow transplant if you’ve got leukemia like you may have been fine yesterday, now today oh my goodness you have leukemia, oh my goodness you could die from this leukemia. But wait we have this amazing treatment we could give you that could cure you.
You’re going to be in the hospital for weeks and you’re going to feel like you’re dying. Oh you could actually die from the treatment. Like it’s crazy making. You can’t make this up, right? Is that what we find is that when palliative care goes in and is helping patients with their symptoms, part of what we have done in these studies is to say to the patient, “You’re going to feel like you’re dying, and we will tell you if you are. Really we will tell you. The vast majority of the time that doesn’t happen, but we will tell you if you are. If not you don’t have to second guess are they not telling us.”
And what we found was that patients had much lower rates of PTSD, post-traumatic stress symptoms, and I think it’s because we’re engaging with them and we’re helping them make sense and have some control and self-efficacy over these symptoms. And also really thinking how do you cope, like we spend a lot of time with them thinking, “How are you going to cope being in the hospital for weeks? Like what are you going to do today? How are you going to manage that? How are you going to stay connected with your outside world within your role as a mom or whatever your roles are that are critically important to you?”
So, I think the more we do that kind of research, the more people understand really what our role is and that part of what I do is hospice, but that is actually a small part of what I do.
Q: Yeah, that’s so interesting. I wouldn’t have expected that palliative care-- I think of it as being medications and symptom management, but I wouldn’t expect it to be that day to day how are you going to stay connected and what are the logistics of what you’re doing.
A: One of the mothers of palliative care is this woman named Dame Cicely Saunders, who was from London, St. Christopher’s Hospice, and she really talked about this sense of a holistic approach to patients and knowing that if a patient isn’t feeling physically well they’re not going to do well, obviously. But if they’re not feeling emotionally connected or they’re not coping well they’re also not going to do well. If we’re not addressing their spiritual needs, if that’s an issue they’re not going to do well. So, it is this really holistic approach and knowing that if a patient’s significant other is really struggling in this space, they’re not going to do well.
So, what, part of what I really love is that it is this really, this approach where I need to check in and make sure that people are doing as well as they can, living in the uncertainty with this really complicated rollercoaster.
Q: That uncertainty piece, how do you help patients embrace that and move through it?
A: Yeah, it’s a great question. So, the way we think about how patients cope with serious illness is that they’re often swinging between really hopefulness, intense hopefulness, and then these little bouts of sort of realism. And that the reality is, if we spend too much time in either place it’s not good, right?
And so part of what we do is we hold that space so people can go back and forth, and we’ll often ask, “What, is there anything keeping you up at night? How are your spirits holding up? Are you-- When you’re trying to sleep and those tough thoughts come what are those things?” And giving voice to them, what we say to patients is, “It’s really tempting to think oh I’m just going to stuff them down and not think about them”. As it turns out that is not so effective.
I always say, “It will come and bite you in the backside at 3:00 in the morning when you’re trying to sleep. So, let’s give voice to them, think about them, problem solve what we can problem solve, and then package them back up.” We talk about opening the box, talking about difficult things. Let’s close the box back up. That was good work. Let’s put it back on the shelf.
And now let’s go think about, “What is my next trip? What is my next thing that I’m going to be looking forward to? What feels important?”
So, it is this mirroring the swinging back and forth and giving patients space to, to talk about the hard things and also to be hopeful, because I hope that that next treatment works for a really long time, too. And I want to make sure that they have begun to think about what is important to them in case that doesn’t happen.
Q: And how do you go about engaging not just with the patient who is in front of you but their support network, their partner, their family, their children?
A: It’s interesting, it’s different almost in each situation. Partially because in some family units everybody is on the same page and they are all holding the same information and the same knowing. And in some family situations, the patient may have a deeper knowing and the family may not. And the patient may say, “I want to talk to you alone, because I don’t feel like I, like they’re there yet.” And they may ask me to have a discussion with their family to be able to help them come along. Sometimes the reverse is true, the patient is not there yet and the family is very worried about how they are going to take good care of them, because they feel like they are seeing that things may be getting tougher, and the patient may not have an awareness.
So, we try to keep the patient at the center and ask what would be important, ask permission, if it’s okay for us to talk with other family members about what is going on.
And the other piece that is really confusing for patients and families is this sort of swinging of awareness that we talk about is something that it can change day to day or minute to minute. And so, family members will say, “Today we were talking about this really tough thing and then an hour later they were saying I can’t believe that this is going to happen, that I could really die from this cancer.” And part of what we’re trying to do is say to the family, “That’s normal. It’s completely normal and don’t be shocked by it.”
A psychiatrist who was here who did a lot of work in this area named Avery Wiseman who I had this intellectual crush on, he just died at 103. But he talked about this concept of middle space of knowing, that it’s impossible to have an awareness of your mortality every moment of every day, so you push it out. And for people to realize and for clinicians to realize that that is normal.
A lot of our oncology colleagues would talk about, “We’ve got to get the patient on our page and keep giving them more prognostic information.” I was like, “No, no, no, it’s okay. They will come to it. Like unless somebody is really, really ill right now where we have to have them make a really difficult decision, often we can give space for them to swing and they will come to it in their own way.”
Q: I think often when someone gets sick they expect certain things from the people around them and the people around them don’t always fulfill those expectations for a variety of reasons. So, how do you help a patient manage what might be those disappointments?
A: Part of what I’m always assessing is where the patient is and what support they have, and how much I think that inner circle, I call it the “A Orbit,” is going to be able to step up to do what that patient needs. And sometimes I actually in my head know that this isn’t going to be anything really dramatic and we’re going to have a couple of years of sort of slowly declining function and I think everybody is going to be okay.
There are times when people might not have a partner, and it may be extended family who are needing to help manage, and they have got a lot of difficult care needs. And so in my head, I’m trying to help everybody make sense and feel good about what they can do and what they can’t do, and then get resources in place to be able to help everybody.
Sometimes it’s important that your sister is just your sister and not the person who is providing personal care, and the question is how can we manage that and how can we leverage support from payers or institutions or resources locally to be able to get patients the resources they need to be able to be as independent as possible and where family can be family and don’t necessarily need to be direct caregivers.
Q: Vicki, I know you have done a lot of research that is really changing the way that people approach the field. So, can you talk a little bit about what you have been doing research wise?
A: Yeah. So, we worked very closely with Jennifer Temel who is the head of the Cancer Outcomes Research Group at MGH, and have done several studies looking at early intervention palliative care for patients with serious illness. And the original study was published in the New England Journal of Medicine in 2010 and showed that patients who saw palliative care early in the course of their illness had improved quality of life, they had a much lower rate of depression, they also had different end of life outcomes, they were less likely to get chemotherapy in the last 60 days of life. They also in that study lived nearly three months longer than patients who didn’t get palliative care. And we didn’t look at survival because we thought that palliative care was going to improve survival. We looked at it because we knew that critics would say, “Great, you made them feel better, but they died sooner.” And so I think the way we think about that research is that it is really clear that having palliative care involved improves outcomes. It doesn’t shorten anybody’s life.
If anything it may be that with good symptom management and allowing patients to have I think two things happen, one, I think patients having better symptom control can get disease-modifying therapy that helps them for longer. I think the other piece is there are times when patients may make decisions to try to push to get disease-modifying therapy when it might do more harm than good, and if they are able to say, “Listen, it isn’t the only way to fight the illness is to get chemotherapy. There are other ways to be engaged with the world and be my best self,” changes the way that time goes for people.
So, we repeated that study in a larger group of patients, saw similar quality of life improvements in mental health outcomes.
Also in both of our latest study showed improvement in caregiver mental health outcomes. So, if the patient is doing better, the caregiver has less anxiety and depression as well. And I have to say I think like the depression outcomes is the thing that I am probably more proud of.
There is a patient who in our first study said to me, “So, Vicki, let me see if I get this right. You’re going to help me live well, and you’ll tell me when I should worry, and otherwise I should just do my thing?”
And I was like, “That sounds awesome. Just do your thing, my friend. I’ll let you know when we should worry.”
He was like, “Okay I’m going to go.”
And so like I think there is a way that patients, when they’re living with serious illness, have this extra burden and worry that people aren’t really telling them what is happening to help them plan for either their family or to make good medical decisions. And so I think that there is something in that contract that they know that there is another safe place to talk about what they’re worried about helps there.
Right now we’re doing two more studies that are really interesting. It’s really clear that there will never be enough palliative care clinicians to go around, so we’re doing two different studies. One is a less intense palliative care intervention, seeing patients at the time of diagnosis, but then only if they progress on scans or if their quality of life drops on measured instruments. And we’ll see whether that is as effective. If so, it may be that we’re able to do something that is not as intense as needing to see people monthly or every couple weeks.
Another big study we’re doing is looking at the use of video to be able to actually do video visits. So we have one in-person visit and then the remainder of the visits mostly are video visits to see whether we are able to extend the reach. There are many places in the country that have no access to palliative care at all, especially rural areas, so this will be really interesting to see if that is as effective as us seeing the patient and family in person.
Q: So that initial study that you did had these pretty astounding results. I’m wondering if you were surprised by what you found.
A: Well, you know, my job is to improve people’s quality of life, so that was a big huge relief, because that would have been a serious bummer if that hadn’t been true, so I have a sense that that would be true.
To me these, the mental health outcomes for both patients and their families is really what is surprising to me, realizing how living with serious illness is so isolating. There is some suggestion in the literature that patients and their providers sort of collude not to talk about these things. The patient is like, “Hey, the clinician will bring it up if it’s really a big deal.” And the clinician is like, “You know, I don’t want to bum them out, so I’ll wait until they bring it up.” And then the reality is the patient and family are really isolated. So, I think the idea that we’re helping patients make sense of this over time and supporting everyone in that feels really, really meaningful and important.
So, I think I just am really interested in helping to move the field forward to understand what it is that we’re doing in that space and how is it that we’re helping patients cope better and make sense of their illness and be able to live more fully.
Q: Absolutely. I’m curious to hear a little more about the technology piece. You talked about the video visits, are there other things like apps or-- You know, we have all this technology. Is that helping the field?
A: So, it is. So, Mihir Kamdar, who is one of our physicians is trained both in palliative care and interventional pain, and just completed this really interesting study where he had built an app for cancer pain and other symptoms. And patients would be able to download the app onto their phone and the app would check in with them, “What’s your pain level? Have you taken your pain meds? Why aren’t you taking your pain meds?”
He had done this great job of videotaping the nurse practitioners in our clinic, so when patients wanted information about constipation you clicked on the video and you got one of your providers who you saw in clinic talking to you about how to manage it. And what was really interesting is we found that patients had improved cancer pain. So, what would happen is if their cancer pain was consistently high, despite the interventions from the app, they would automatically get a phone call from one of our nurse practitioners. And what we found was that it actually, the app did a really great job helping patients be able to manage more effectively their own pain and pain medication.
It didn’t really result in many more calls to the clinic, which was interesting. And we saw that there was a decreased number of admissions for cancer pain. So, I think these kinds of interventions are only going to become more important. Our division is both palliative care and geriatrics, we’re now starting to think about how do we think about these kinds of interventions for caregivers in say the dementia space where it is a very, very difficult job, and how do we help them behaviorally manage these things that can come up with their loved ones, how do we give them the support they need so they don’t get burned out so they can do what they need to do.
So, I think that the AI space is really where we’re going to need to go next, and I think we did, Mihir used the app for cancer pain, I think we could use it for nausea, we could use it for shortness of breath, we could use it for a variety of other symptoms, and, also in helping the family be able to cope better with what is happening.
And instead of us having to guess when to reach out, we’re getting the data about when they actually need us to reach out or they can reach out to us via the app too. I think we’re going to have to figure out how do we leverage that space. Everybody is ordering their groceries online or doing whatever, right? It makes a ton of sense that in the medical space we need to think about how do we empower patients and families to interface in this way.
Q: And do you think there might be an effect that, you alluded to this a little bit earlier, patients, you want to be a “good student” and you want to show up and you want to feel better, but you might be a little more comfortable being honest with an app?
A: Yes, I think that that is true. You know, we see this all the time. The oncologist will see a patient, ask the patient, “How was your week? What did you do? How is your pain? What is happening?” I go see them. They have been in bed the whole week. And I call the oncologist ….and I’m like “Hey, did Jane tell you she’s…” and he’s like, “No, I asked…” and I’m like, “I know…”
There’s a way that everybody wants to be a good patient that I think makes it challenging. I think that having an app, I think there’s a way that it doesn’t feel as personal. I think also the fact that palliative care is interfacing, versus them needing to tell the oncologist that they’re feeling so poorly.
I remember in our first study we had a patient who Jennifer Temmel and I were caring for. And we had seen her on like a Monday, and I was out for dinner with family on Saturday, and she called and she was so short of breath she couldn’t speak in full sentences. And I said, “I’m not sure what’s going on but you have to go to the Emergency Department.”
And it turned out that she had fluid around her heart and was very, very sick. And she got it fixed. And I saw her on Monday and I said, “You know, just out of curiosity, why did you call me and not Dr. Temmel?” And she said, “Jennifer’s doing such a good job trying to help me with my cancer, and I didn’t want her to feel badly.” And I was like, “Right.”
You know, they don’t call me because they feel more connected to me. They call me because I’m safer, because they feel so connected with their clinician. I do think that’s something we have to understand, allow patients to be able to tell us what’s going on, and to lower the threshold. I think if we see that somebody’s symptoms are difficult, then we need to be triggered to reach out. Instead of them having to reach out. Because I think they feel like they’re a wimp, or they’re a bad patient or the clinician is not going to be as aggressive in their treatment. There are a variety of things that are barriers that prevent them from reaching out.
Q: I’m wondering, Vicki, when someone first gets diagnosed you’re initially engaging with them, is there common council that you often give to patients?
A: Yeah, I tell patients when they are first diagnosed that, first I say, “I’m sorry we’re having to figure this out.” Second thing I say is, “You have been a competent, capable person in the rest of your life, and you will find a way to become competent and capable in this space too. I wish you didn’t have to, but you will.” And giving them the confidence that they will find their way, and that one of the most unsettling times is in the beginning, when you don’t know your care team, you don’t know how these treatments are going to impact your body, and everything is undone. And that our job is to be able to help them to regain some control.
I always say to patients, “My job is to teach you how to manage this illness, and you are going to learn. And I’m gonna be here. You can call me if you have questions, but you’re going to have tools in your toolbox that you can use. So if you’re having a good day, you think about it this way. If it’s a little bit of a tougher day, you think about it this way.”
Just to empower them, I think is the really most important piece.
Q: Yeah, and I like that idea that there’s a learning curve. It’s humbling, as you said, when you are this confident, capable person and all of a sudden you’re at zero.
A: Yes, and I say, “Be kind to yourself. It will happen, just give it some time.”
Q: What about family members. I imagine you have people calling you all the time when a family member gets diagnosed with something serious.
A: Yes. In fact, so Dave Ryan who is the Chief of Oncology. He and I actually wrote a book called Living With Cancer to try to help empower patients and families to think about this kind of work.
I think that there are two things that happen is family members often feel so vulnerable and they’re often wanting to make sure that they have researched every possible treatment and what they can really advocate for.
They’re also wanting to be able to be as helpful to the patient as possible, and sometimes the other piece that happens is, especially if it’s like the matriarch of the family, she is used to taking care of everybody else. She is not so interested in having people take care of her. So, another piece that we negotiate is trying to help patients be able to accept that.
There was a patient who I cared for years ago, a young man who had pancreatic cancer, he was in his 20s, and he said to me, “My family can’t go through this treatment, but the way I can show my love for them is to let them help me.”
Q: Yeah. And are there still things that you find surprising? You’ve been doing this a long time.
A: Yeah. The thing that I am just sort of thinking a lot about right now is that the gift of all of the new treatments that we have that are so amazing and so humbling. And I am surprised by how it makes it so much harder for patients and families and clinicians, because there is just uncertainty, you know.
I had a patient who was really, really sick. We thought time was pretty short for her, she got immunotherapy, and it’s three years and she has no evidence of disease, which is amazing. And she is really struggling. And she says, “What does this mean? Am I cured?” And we have to say, “I don’t know. We have no idea.” And she is young and she said, “Can I get married?” She was prepared that she wasn’t going to have that life, and now she is living in limbo and uncertainty.
And so I am surprised repeatedly by the gifts and the burdens and benefits of all of this new frontier that we’re in. And how do we help patients and families make sense of that. She wouldn’t want any other outcome. It’s amazing.
There has always been uncertainty, but the level of uncertainty now, especially in cancer treatment, is even more profound, which is just really, it’s hard. And so that, I am continually surprised by how hard it is for patients, families, and their clinical team. They’re struggling too, because our doctors here want to do the best for patients and they want to do the right amount, they don’t want to do something if they don’t really think it’s going to be helpful, but where that line is anymore is not clear.
Q: That’s so interesting. I think we think about all these medical advances, and obviously they’re amazing and wonderful and bring hope and life, but there is, I don’t want to say there are drawbacks, but--
A: Well, there is just a reality. Living in uncertainty is the hardest part of having a serious illness, and I think that the treatments often right now are just adding to uncertainty in a way where really I’m feeling like I am really trying to push patients to spend a lot of time thinking about they are going to be living in uncertainty for years. And even if they are five years out and we think they are essentially cured, we just don’t know. And there are also side effects from these treatments that can come, present years later.
So, I think it’s also hard for patients, because they’re used to their clinicians being able to with certainty say really what they think is going to happen, and that isn’t the case anymore in all of these different areas.
Q: So, one last question. You spend your days working with people who are facing dire diagnoses and some of them are near the end, so I’m wondering do you think you live differently because that is your day to day?
A: I feel like, you know, I hope I am helpful to my patients. I feel like they are incredibly helpful to me in staying grounded in this way. I do know that it’s just dumb luck that it isn’t me in that bed or one of my family members. So, and I think some of this stuff could sound kind of trite, but really it’s like try to be a good human in the world, try to do something with the talents you have, whatever that is. I am pretty quick to tell people I love them and I’m grateful for them, because I just know.
A patient of mine, one time I asked her if there were things that she felt were left undone and she said, “You know, I live with my side of the sidewalk as clear as it can be.” And I thought that was powerful. And she said, “There isn’t anything I don’t feel like I’ve said .” And, you know, it’s not always possible, but to be able to do that, I think is really important.
And what is also really clear to me is that my family and the people I work with and my community are the most important thing, and I try really hard not to take that for granted, because I always say it’s the stuff we worry about all the time is often not the thing that happens; it’s the random call on a Tuesday afternoon at 2:00 PM that completely changes your world. So, how do we live in a way that allows us to in case that happens have lived with our side of the sidewalk clear?
Q: This has been so wonderful to talk with you, Vicki. Before we wrap up I have my final five questions. So the first question is what is the best advice you have ever gotten?
A: I think the best advice I’ve ever gotten is to just follow what is really interesting to you. And try to do the things that you’re both good at and interested in, instead of trying to get better at things that you’re really not interested in or good at.
Q: What does the word charged mean to you?
A: To me it means really being excited and engaged and helping others be excited and engaged. Like I feel really charged by my work. My biggest issue is not having enough bandwidth to collaborate with all the people who want to collaborate in the space with us, which is incredibly energizing.
Q: How do you recharge?
A: For me it’s all about family time, being in the woods with the kids, the husband, the dog is good. We have our rituals that we do, and ritual vacations. We always go to Wellfleet in the summer for a couple weeks, and I like take my email off my phone. I figure people will know, if it’s an emergency they will know how to reach me, because otherwise I just can’t not look.
A: So, to really, really unplug and find ways to do that, and just to sort of put the phone away when I’m home and then hanging out with my kids as much as I can I find is helpful.
Q: Do you have a favorite woods?
A: Well, we have several favorite woods. We have one that is really close in our neighborhood that is called Cabot Woods. We also like to go in the woods in Wellesley and then sometimes we’ll go to the Fells, hiking in New Hampshire.
Q: There is a lot of good woods around here.
A: Yes there are.
Q: When and where are you happiest?
A: We have this fireplace that is really lovely, and with my family, with the two kids and the dog and the cat hanging out and being able to be there together in very simple uncomplicated relationship with each other.
Q: And what rituals help you have a successful day?
A: I think, you know one piece for me is to really have some quiet time and really to try to think about like when I’m walking from my car actually take a deep breath and think about having some intention about what the day is going to be like, instead of just like rushing, rushing, rushing. So I think for me I find if I can take that little bit of time to sort of dip into my coffee, and have some intention, and if I can get some physical activity it really helps sort of change the way the whole day goes.
Q: I love that, approach the day with intention. Well, thank you so much, Vicki. It’s been an absolute pleasure talking with you and learning a little more about what you do.
A: Thank you. Thank you so much.