Dr. Shoshana Ungerleider (Founder, End Well Foundation) joins CareTalk to discuss how we can make end of life care a more humane experience.
David Williams (00:00):
I love talking about life John, but I don’t think we say enough about death.
John Driscoll (00:04):
What do we have to say about death?
David Williams (00:06):
Not that much, but I know somebody who’s an Academy Award nominated filmmaker in this very topic, Dr. Shoshana Ungerleider and she has agreed to step in.
John Driscoll (00:15):
Great. Let’s get to it.
David Williams (00:27):
Welcome to CareTalk, your happy home for incisive debate about health care, business and policy. I’m David Williams, president of Health Business Group.
John Driscoll (00:35):
And I’m John Driscoll, the CEO of CareCentrix. David, who do we have today?
David Williams (00:38):
Well, I think we have … Is there a doctor in the house? I think we have Dr. Shoshana Ungerleider and I know John, you’re always threatening to end my life, which I never appreciate. And I hope the sensors don’t here that, but today we’re going to talk about a very serious topic, John. End of life issues.
John Driscoll (00:54):
Well, and I think putting the patient and sort of the care back into health care, and there’s no authority I can think better to help us guide through those issues as Shoshana who comes to it not as an expert, but as an evangelist for a more humane approach to end of life care. Shoshana, welcome.
Shoshana Ungerleider (01:14):
Oh, thank you so much for having me. It’s great to be with you.
John Driscoll (01:17):
Shoshana, maybe we could start with kind of how you got to end of life as an issue for you. You’re a doctor, you trained as an internist. What drew the passion out of you for this issue and what are we trying to solve for here?
Shoshana Ungerleider (01:35):
Yeah. Well, I could probably talk for hours about the story that got me here, but really, I went into a medical school and early residency thinking I wanted to be a cardiologist. I loved sort of dealing with pathophysiology and understanding how the heart and the lungs and the body kind of worked together in illness and in health. And I was totally blown away and quite surprised myself to become interested in the end of life. And it was really by accident in doing my required month’s learning about intensive care medicine. And I was struck by the number of often older adults who were quite frail at baseline and had multiple chronic illnesses they were dealing with and ended up in the ICU because of widely metastatic cancer or end stage organ failure.
And these people in their ’80s, their ’90s were spending their final days, weeks of life hooked up to tubes and machines and hidden away from the people that they love and surrounded by all these strangers. And it occurred to me that number one, they didn’t have a say in that trajectory. Meaning that, by default in the United States, you will receive very aggressive, invasive treatment in a hospital, no matter how old you are, no matter how sick you are. And sometimes even if it won’t help you. We have lots of protocols in this country and the way that we learn medicine is such that, doing things to people and more is always better. And for some people that’s absolutely true and we save lives every day in our ICU because of it, but for other people, it doesn’t make sense.
And we aren’t stopping to ask really important questions of our patients and their families. Like, what matters most to you? What does a good day look like for you? And if time is short, how do you want to be spending your time? We get caught up in this sort of protocolized conveyor belt of care. And so the number one thing that occurred to me was that people didn’t have a say. And then the second thing was that we weren’t stopping to ask these really, really important questions along the journey of care, not just in this acute crisis moment. To find out how we can best support people’s goals and values around living their best life, and then tailor our care based on the answers to those questions.
And so that’s what really set me on a path to be thinking about improving the end of life experience, thinking about the ways that we can use things like palliative care, like hospice, which as you know, is a form of palliative care for people who are reasonably within six months of the end of their lives. And how we can all think more holistically as a culture about questions related to a human centered experience around illness and around the end of life. Inclusive of grief and caregiving and things that all human beings are going to encounter in their lives, if they haven’t already.
David Williams (04:52):
Things that you say about this really ring true for me. And especially, in the US context, in terms of the culture of the technology and so on. How did we get to this point? And you specifically mentioned the US. I don’t know, if you studied elsewhere, but why is it like this in the US, which I think is a way that most people are not happy?
Shoshana Ungerleider (05:09):
Yeah, I’m definitely more knowledgeable about the United States as opposed to other countries. But what I would say is that, around a 100 years ago, we didn’t have modern medicine. We weren’t focused so much on institutions and hospitals as places of care, most people who became ill were treated in their own homes. Their doctor, or their nurse, or some kind of community health worker, which of course it wasn’t called at the time. But someone came to the home, cared for patients in their own beds. And then when people were near the end of their lives, they were laid out in their parlor surrounded by their family and maybe their friends. And death was sort of talked about, thought about, expected. People knew what to do when a loved one died, because it happened in the home.
And it wasn’t until we became very advanced in medical technology of which there are of course, wonderful, obvious benefits there. But the end of life experience, the experience of illness really is hidden away for most people. And so therefore, culturally speaking, we’re not really thinking about it. We’re not seeing it necessarily as a part of life, and we sure aren’t planning around it. And so I think for a number of reasons, death is really seen in medicine as a failure, something to be avoided at all costs. And I think, from all the reasons that I’ve mentioned historically, and otherwise, we sort of see it still as this very taboo topic. That’s not to say that this is something easy to talk about, and we should be overjoyed to discuss death and dying. That’s not at all the case. It is definitely hard and comes with its inherent, emotional challenges. But it’s something that I think is a natural part of life. And the more that we can have some relationship to the fact that one day life ends, the better, I think we can live every day. And for sure equip the people that we love with the right information for us, if they have to speak for us near the end of our lives.
John Driscoll (07:15):
Shoshana, what I’m still struck by is how big the gap is between what people want, as you know at CareCentrix we bought a palliative care, [inaudible 00:07:25] based palliative care end of life company last year, Turn-Key because we thought it was a natural extension of taking care of the chronically ill. But I believe the numbers are still about 80% of people want to die at home. And less than 20% are given that option. What is it about our system? Is there anything else that you can point to that got us to this not overmedicalization in general, that is perhaps true, but definitely overmedicalization and detachment of humanity in those critical kind of stutter steps towards the end? I mean, you’ve really studied this. I’m still stunned at the disconnect between families intentions and how families are served. It’s frustrating as all get out.
Shoshana Ungerleider (08:18):
It absolutely is and it’s very complicated. I think there’s so many points along the way where we have these missteps, absolutely. To me, the big thing that stands out, and I don’t know that this is the answer, is that it’s conversations are not taking place along the way to make sure that the care that people receive is care that they really want and that’s in line with their goals and their values. And so what we do know, is that we are not training doctors in how to have difficult conversations with patients. We’re not giving them the tools that they need in order to connect with patients, connect with families and caregivers. Years upstream from an acute crisis moment, it is not something that is valued within medicine because it’s not something that’s reimbursed.
So that is slowly changing over time, but a journal of the American Medical Association study came out in 2016, showing that of all the clinicians surveyed 70% of them, that’s 70 had not been trained in how to talk to their patients about hard things. That’s shocking, when you think about the fact that surgeons, depending on your specialty of surgery, spend seven years learning how to take out a gallbladder or do some other kind of procedure. We need to be treating communication training as a procedure in medicine.
John Driscoll (09:43):
I think I’ve shared this story with you before, but my father had a brain bleed at a football game, the Harvard, Penn game about 10 years ago. And he was recommended immediately, he was shot into the medical industrial complex of Mass General. And at 6:30 at night, I got a call from my mother. I was rushing to the hospital from Connecticut and the recommendation was for traumatic brain surgery. And so I immediately convened a meeting of my mother and my brothers, their spouses, my spouse. And we literally had an intervention with the surgeons and the staff, where we went through very specifically what his life was likely to be and what rehab was likely to be. And everyone got an opportunity to talk. In between the time that the … And I very vividly remembered this in front of a restaurant and a [inaudible 00:10:36] stop on 95.
Beginning of the conversation, at the end of the conversation, the surgeons had a completely different recommendation and it was almost like their eyes couldn’t rise from the procedure in front of them. And at least to me, it felt like, and it gave everybody an opportunity to grieve a little bit for what might or could or was, but also to focus exactly on the choices at hand, in what it meant in terms of life or illness, disability, death and care. At the end of it, the surgeon said, “You know what? This is not a path that we should go in for your dad.” It was remarkable, and it was purely instinct that had me kind of convene a family meeting on demand. And then also included a doctor who was not part of the care team to make sure that we were asking very precise questions of the doctors.
And it was literally, I think the entire family and the doctors were in one place at the beginning of the call and everyone was at a different one. And he died in peace without the trauma and drama of what was likely to be a failed surgery. It brought your point home very personally.
David Williams (11:51):
Shoshana, these conversations I think are really helpful, but I wanted to say you’ve certainly helped to spark some of them, but you’ve also gone beyond that and made at least three films that I’m aware of. Could you maybe talk about what was sort of behind that and what the intent and the impact has been there?
Shoshana Ungerleider (12:09):
Sure, absolutely. Well, the first thing that I realized is that the end of life experience, at least from my perspective is not a medical issue alone to be solved. This is a human issue. We need more people thinking about this, talking about it, innovating, collaborating. And so the first thing I did was I started a nonprofit called End Well. That’s explicitly focused on interdisciplinary collaboration to go from thought to action, to transform this experience for people into something that’s more human centered. And then, what we realized is that there are many ways to reach people out there through social media of which we leverage quite often. And then, other traditional media like film, and I had a really unique opportunity by accident back in 2015, got involved with a short documentary project called Extremis. This was a film being shot at Highland Hospital in Oakland, just across the bay from where I was.
Really, was a beautiful project that showed what I had often wished more people had access to, which was knowing what it is like to be sick, gravely ill in an intensive care unit for families, for patients, for health care professionals. Unless you have been sick yourself or worked in that type of a facility, you don’t really know, and you don’t know what questions necessarily to ask and how to best advocate for the people that you love in these moments. Just much like how John was describing. And so Extremis is a 23 minute short documentary, it happened to be the first film that Netflix ever … The first short documentary that Netflix ever bought. And we were nominated for an Academy Award. And then, the reception of that film was really mind blowing to me that so many people, including the Academy were willing to engage with such a hard, intense topic. And it was able to get out there to millions, millions of people.
And so I was lucky enough to get involved with a second short documentary called End Game with a totally different film team. And I executive produced that film about hospice and also palliative care filmed in San Francisco at UCSF and Zen Hospice project, which unfortunately no longer exists. But features the wonderful work of Dr. BJ Miller. And that film was nominated for an Academy Award. And it’s been very encouraging to me to see the reception of projects that are traditionally very challenging topics, but are so incredibly important to kind of bridge this, what you were mentioning earlier. This awareness gap of, what is hospice, what is palliative care, how to best advocate for yourselves in these really, really important moments in time.
John Driscoll (15:08):
And just remember to advocate for yourself, there is a role of the caregiver and the patient that you need to be kind of aggressive about, but maybe you could talk a little bit about what the Zen Hospice got right. It didn’t have a great economic model, but it was a remarkable place and BJ is and remarkable man. If you could just perhaps reflect a little bit on that, because I feel like having lost it, we may lose some of the lessons from that humanization, an attempt to really create almost the art of humanizing the end of life.
Shoshana Ungerleider (15:41):
I don’t know that I can say it better than that, but Zen Hospice project was a beautiful model set inside of an old Victorian home in San Francisco, where they had a six bed hospice. Treating patients who were near the end of their lives. And they focused on things like music and art and food and the aesthetics around the experience. So even if somebody was completely bedbound or maybe unable to speak or bathe themselves. There were so many other more experiential elements of life that I think get forgotten in a traditional health care setting or in a assisted living facility. For example, where they really focus on all of the senses for people, no matter their physical state and really just brought such a beautiful experience for so many patients and families. And I obviously miss the place quite a lot, but it’s a model that they’ve been trying to pilot in other places and a beautiful model of caregiving, frankly.
David Williams (16:54):
Shoshana, obviously the COVID-19 pandemic has been ongoing now for, it’s getting close to a year. You hear a lot of things about people being, not even if they’re dying, but just being alone, if they’re in the hospital. And certainly if they happen to perish from COVID-19, they’re alone. How is COVID-19 impacting end of life sort of specifically for COVID patients, but more broadly, what do you see COVID-19 doing to this whole discussion?
Shoshana Ungerleider (17:24):
Oh, my goodness, so many things. I think first and foremost, the pandemic has really shown all of us that life is incredibly fragile. That tomorrow is never a given, no matter how old you are. It’s shown a light on the hidden world of what it means to be a caregiver, both frontline health care workers, as well as informal family caregivers. And then this idea of loss and collective grief really on this massive scale. So there’s so much there to dive into, but on the clinical side, really palliative care has become the job of many, many clinicians who practice in places that have been initially very hard hit by COVID and now everywhere.
My ER doc colleagues and nurses, primary care physicians, ICU clinicians, who maybe don’t have any training in palliative care have had to because of the speed and severity of COVID. Be able to kind of learn a lot of these fundamentals, especially early on in the pandemic, and then learn on the fly, like how to talk to someone about their wishes. Do they want to be intubated if it’s possible that they won’t be able to come off of a breathing tube? If things are looking worse, where do they want to be? How do we connect them with the people that they love given that families of course cannot visit ill patients in the hospital. And so, I can’t tell you how many, just heartbreaking stories I’ve heard of nurses staying after their shift to hold up an iPad so that a loved one could say goodbye to their grandparent, their father.
It’s just unbelievable what is happening and I think currently the degree to which we’re having to start to ration care is something that really is hard to wrap your head around. Even for me as a physician that in the 21st century, in America, we don’t have the beds, the supplies, the staff to go around to be able to care for patients and save lives. It’s now the job of EMS or a frontline health care provider to decide who lives and who dies. I mean, these are conversations that we’ve never been trained to have or think about. And I think that the effects are going to be extremely long lasting and on par with the trauma that you see in the face of war. There’s a lot there and unfortunately it’s showing all of us just how important these kinds of conversations are on a personal level and also on a societal level.
John Driscoll (20:14):
Our friend, Dr. Chris Chen talked about surviving COVID and the PTSD that he felt from the isolation that was necessary for the care. And I was reflecting on David, the conversation after we finished up with him and our other CareTalk and how that’s being hammered into every caregiver. I mean, perhaps the only good news about it I think Shoshana, is that we are actually starting to appreciate every level of caregiver in the system, perhaps more than we’ve ever done before, which is a welcome balance to our current era where we sometimes are sort of at a loss for everyday heroism.
Shoshana Ungerleider (20:55):
Yeah. I mean, I couldn’t agree more on that. Our frontline health care workers, our informal family caregivers are now really the backbone of keeping society going. It’s just unbelievable and so important to be recognized and continue to talk about and support.
David Williams (21:15):
Shoshana, any ideas for the next film? It sounds like you haven’t necessarily exhausted the topic, given all the new things that are happening.
Shoshana Ungerleider (21:25):
Nothing on the horizon just yet. For me, film is a wonderful platform to share hard stories. And so, if something comes along that is a good fit there, but nothing right now.
David Williams (21:43):
Okay. We’ll wait to see. John, any last questions before we say goodbye?
John Driscoll (21:47):
No, I think that putting the patient and the heart back in the center of care. Shoshana, it’s an honor and a privilege to be able to have this conversation and to again, focus on the kinds of things that David and I really believe in. And you’ve passionately led, about reminding people how important it is to be kind of heart-centered and return the care to health care that’s often lost in the medical industrial complex. So thanks for joining us.
Shoshana Ungerleider (22:15):
Thank you so much for having me.
David Williams (22:17):
Well, that’s it for another edition of CareTalk. I’m David Williams, president of Health Business Group.
John Driscoll (22:22):
And I’m John Driscoll, the CEO of CareCentrix. Thanks for listening.