Today, we’re thrilled to launch the HealthChangers podcast, a new audio storytelling series presented by Cambia Health Solutions. On the podcast, we'll share real stories of health care transformation from those who are experiencing it and those helping to make health care more personalized.
We want to step back and see real people's stories at a personal level. We'll dive deep into specific health care topics, from the problems that health innovators are solving, to personal consumer stories and new technologies, and everything in between.
In our first episode, we were honored to be joined by Dr. Steven Pantilat, Professor of Clinical Medicine in the Department of Medicine at the University of California, San Francisco and the founding Director of the UCSF Palliative Care Program. He also chairs the advisory committee for Cambia Health Foundation’s Sojourns Scholar program, which helps build the next generation of palliative care leaders.
Steve joined us to talk all things palliative care—what patients should expect when they receive a life changing diagnosis, how family and friends can be supportive, and what the health care system can do to support people and their families during their journey. He also shared the inspiration behind his new book, Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.
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Learn more about Dr. Steven Pantilat:
JS: Joining on us the phone from UCSF is Dr. Pantilat. Welcome, Steve!
SP: Thank you Jeremy, pleasure to be with you.
JS: Thanks for being here, we’re really excited to have you and it’s been nice working with you over the years on this really important topic of palliative care.
SP: Yeah, same.
JS: Can you start and explain to us all, what is palliative care?
"The focus is on how we can help people have as good of quality of life of possible."
SP: At its most basic level, palliative care is medical care that’s focused on improving the quality of life for people with serious illness. So let’s think about that a little more deeply. The focus is on how we can help people have as good of quality of life of possible.
And rather than focusing on treating the underlying illness, the cancer, the heart failure, the lung disease, the stroke, the Parkinson’s disease, which will be treated by good doctors and nurses, palliative care really takes a step back to look at the whole person, and understand that a person is much more than their disease. How can we help an individual have the best quality of life?
And that includes making sure that your pain, that your shortness of breath, that your fatigue are treated so that you feel physically as well as possible. And that we address emotional, and psychological, and even spiritual concerns because we recognize that our quality of life includes those aspects of who we are emotionally, psychologically, and also focuses on how can we make the best possible decision so that the treatment that we receive are consistent with our values and goals, and really help achieve those values and goals.
And then it’s focused on people with serious illness. And a serious illness, we know what those are. Cancer, and heart failure, and emphysema, and stroke, and Parkinson’s disease, and ALS. These are serious diseases that really grip us, change our life.
"There are things you can do to get control of this plane, and to get it to fly smoothly."
I think about it like this. Imagine that you’re on a plane and you’re flying at 36,000 feet and everything is peaceful and calm and suddenly the plane drops 10,000 feet and you look out the window and there’s an engine on fire, and you think “I’m going to die.” That’s what it’s like when you get this serious illness diagnosis. When the doctor says, “I’m sorry, you have cancer. You have heart failure. You have a stroke. You have dementia.” It feels like the plane is going to crash and burn.
And the truth is that while it is life changing, there are things you can do to get control of this plane, and to get it to fly smoothly. And there are ways you can live your life to really make the most of your life and have the best quality of life, even when you’re facing serious illness.
I wrote my book in part to address that issue for people, and to help people recognize that there’s a lot we can do to live better, and to live longer, in the face of serious illness.
"Her hope was in fact really realistic and something we could help her focus on."
JS: I love your approach around “What are people’s goals?” I think there’s some goal alignment when someone is facing serious illness and what it means to them to live well. What is that like for people? You’ve obviously been with a lot of patients and doctors in those moments of serious illness. Can you describe that process a little bit of defining what it means to live well?
SP: Yes. Recently I was taking care of a woman, she was in her seventies, Mary. She had very advanced interstitial lung disease, and what that is a scarring of the lungs that destroys the lungs, causes shortness of breath and makes it very difficult for people to breathe. And unfortunately, there is no cure for this disease. There are things we do to treat it, but unfortunately there is no cure.
So Mary was in the hospital with shortness of breath and we were asked to see her on the palliative care team to see if we could help with her shortness of breath. And she was on a lot of oxygen and we asked, “Mary what’s most important to you? As you look to the future, what do you hope will happen?”
And she said, “I just want to get back home and have time with my husband, my children and my grandchildren. That is what is most important to me and that is what I hope will happen.”
And that’s where we put our energies. And it was interesting because she didn’t say she was looking for some miracle cure, although some people do ask for that, but her hope was in fact really realistic and something we could help her focus on.
So rather than thinking about all these other potential treatments or clinical trials, we were laser-focused on how could we get her home, how could we treat her and help her feel better and better enough to get her home. So one of the things we did was we starting using Morphine for her shortness of breath, knowing that Morphine is a really good medicine for helping people with shortness of breath. And it did help a lot, to the point where we could turn down the oxygen to a level where she could go home.
"I’ll admit, donuts are a small thing, but it’s a way of acknowledging and recognizing what’s really important to someone"
One morning, I asked her, “How’s your appetite?” And she said, “Well, it’s okay, I’m not eating that much because you know, hospital food.” And I said, “Yeah, I’m sorry about the hospital food.” And she said, “Well, it’s not that—they have me on this low-fat, no-salt diet because of my heart disease.”
At this point, we thought Mary had somewhere between a few weeks to a month or two to live. And here she was on a low-fat, no salt diet because they were worried about her heart disease. And I wish that heart disease that was the thing that was going to get her, but it wasn’t, it was the lung disease, and this diet was just making her miserable.
So I said to her, “We’re going to change that diet and really you can eat whatever you want that tastes good. And if you could eat whatever you want, what would you want?” And she said, “Well, I’d really like a glazed donut.”
Which we couldn’t get in our cafeteria, so after rounds we huddled together to decide who’s going to get that donut, and after that it became my assignment. So on my way to work that next morning, I stopped at this great donut shop in my neighborhood and got a box of glazed donuts and we brought them with us on rounds to Mary. And her face just lit up.
It’s recognizing what’s important to someone? What do they value at this stage of life? And this is a small thing, I’ll admit, donuts are a small thing, but it’s a way of acknowledging and recognizing what’s really important to someone, and speaking to them as a whole person and what they value. And recognizing that we’re listening to what’s important to you.
And Mary got to go home just a couple days later which was really wonderful. Her daughter emailed us to say, “Thanks for taking care of my mom,” and I emailed back to say “We’re thinking about her and send her our best.” And she emailed back to say, “Dr. Pantilat, I want you to know, after she went home, I Googled donut shops and found one in her neighborhood and brought her fresh glazed donuts every morning when I went to visit.”
And again, a small thing, but one that really made a big difference, and symbolically as well as practically, said this is about you and your experience. And it was only by asking what was important to her that we were able uncover and discover what was important and make sure that’s what we addressed for Mary. She got to be at home, she had hospice services, and she had a really good five weeks at home.
"There’s good news and bad news in health care, and the good news is that we’re living longer than ever."
JS: I love your focus on the patients. It’s obvious that you have a lot of compassion for the people you work with and a lot of passion around palliative care.
I’m wondering, how does the health care system orient itself around making palliative care an essential service? I think I heard you once say you’d like to see palliative care an essential service like flu shots or mammograms are today. Where do you see us on this path of accomplishing this vision, and how do we get there?
SP: The first thing we need to realize is that there’s good news and bad news in health care, and the good news is that we’re living longer than ever. In the United States on average, we’re living to eighty years, and that’s increased dramatically over the last hundred years, where we used to die in our fifties, we are now living to eighty on average. And that’s tremendous. That’s good public health, that’s good medical care, and that’s been tremendous to be able to live longer.
The bad news is that that extra time that we have, for most of us, will be spent living with serious illness. With heart failure, with lung disease, with Parkinson’s disease, with cancer, and it creates challenges for us as individuals for how we’re going to live well. The beauty is that there are things we can do to treat illness and we now know it’s at the same time that we’re treating the underlying illness, we provide palliative care and can help people live better and longer.
"Everything good that we wanted to have happen to people, happened to those people who got palliative care."
There was a study done by my friend and colleague Jennifer Temel at Harvard and Massachusetts General Hospital. And they enrolled 150 people with metastatic lung cancer. What does that mean? It’s lung cancer that has spread beyond the lungs and is not curable. We can treat it, but we can’t cure it, and on average people can live for nine months with that illness. And the study they did is that everyone got that standard chemotherapy at Massachusetts General Hospital, and that’s very good care. I like to say, that’s not UCSF, but it’s really good care.
At the same time, they assigned half of those people to get palliative care from the time from diagnosis. And what did they find? What they found is that people who got palliative care in addition to chemotherapy, they had:
Which is to say that everything good that we wanted to have happen to people, happened to those people who got palliative care.
"It would be the blockbuster of the century if you could create a drug that was as effective as palliative care."
If this was a drug, everyone would get it. It would be the blockbuster of the century if you could create a drug that was as effective as palliative care. And not only would we give it to everyone with lung cancer, we would give it to anyone with cancer. And in fact based on this study and others, there’s now a recommendation from the American Society of Clinical Oncology that everyone with metastatic cancer should receive palliative care.
And so the question is, how do we make that a reality? Because it’s not as easy as just prescribing a pill. It’s a team of doctors, nurses, social workers, pharmacists, chaplains, working together on the range of issues that matter to the entire person. The physical, the emotional, the psychological, the spiritual, the practical issues of how do I live well with serious illness and how do I make good decisions about my treatment.
"There’s a lot that I’ve learned being a palliative care doc for 27 years that can be really helpful to people."
SP: About twelve years ago, my friend Johann called me up and said, “Hey Steve, you know my mom is going through breast cancer, and my dad is having a hard time. They’re trying to decide if she should enroll in this clinical trial, can you just call him and talk to them?”
And I said, “Look, I love your mom, but I’m not her doctor. And I love your dad, but I don’t really know him that well.” And she was very insistent and said “Just call him. I think it’s going to be helpful.”
So somewhat reluctantly I called him, and I spoke to Phil on the phone and he was explaining about what’s happening with his wife, and what she’s going through, and the decisions they were having to make, and we chatted for maybe half an hour. Johann called right away and said “Oh, my God! That was so great. Thank you so much. That helped my dad so much.”
And that was my first insight into even if I’m not your doctor, even if I don’t take care of you, even if I don’t know you well, there’s a lot that I’ve learned being a palliative care doc for 27 years that can be really helpful to people.
And it was then that I decided I wanted to take this information that I’ve learned, and all of the insights I’ve learned about the system, and how you can make the system work for you, and how to take control of that plane as co-pilot and get it running smoothly, and more importantly landing smoothly and not just crashing and burning, and putting that into a book for people. I’ve had that experience repeatedly over the last twelve years with friends, colleagues and family members who call and need that help.
"He looked at me and said 'Dr. Pantilat, how long do I have to live and am I going to die?'"
The challenge is you can’t just Google your way through this. You can’t go online and say “Feeding tube and dementia, should we do it or not.” “My mom has advanced Parkinson’s disease, what should we do.” There’s no easy way to find that information online.
For example, my patient Sam. He was 89 years old, he was a retired school teacher living in a row house in San Francisco with his wife, still married, going out dancing twice a week, still driving. And one morning he had this terrible hip pain and he called me, I told him come to the ER. We did an X-Ray and there was no fracture. We figured he had fractured his hip and that’s why it hurt so much, but there was no fracture.
So they did the CT scan to search for a small fracture. And they did the CT scan and always get a few images above and below the area. They got a few images through the liver that showed two areas suspicious for cancer. Unexpected. Now his hip pain got better, he was able to go home, but he now had this issue to deal with. They set him up for a biopsy that showed he had colon cancer that had spread to his liver.
So Sam came to my office with his wife and daughter and they sat down and I said, Sam, I’m really sorry to have to say this but the biopsy showed that you have cancer, colon cancer, and it’s spread to your liver. And it was like the plane had dropped 10,000 feet and the engine was on fire and there was this panic in his eyes, you could see it. And after a minute, he looked at me and said “Dr. Pantilat, how long do I have to live and am I going to die?”
"This is normal, this is what’s real, and this is how to talk to your doctor about it."
Those are the kinds of questions that I always hear from patients. And those are the things people think about when they hear that diagnosis. When the doctor says “You have heart failure. You have dementia. You have Parkinson’s disease.” People think they’re going to die. People get this diagnosis like Sam did, five thousand times a day, Americans are diagnosed with cancer. There are almost six million Americans living with heart failure. There are over five million Americans living with dementia. This is incredibly common for us as individuals, and for family members who love us who now have this go through this experience as well.
And it is for those people that I wrote the book. To take you from those moments of diagnosis, when those questions go through our mind, and to give you information to say that if you’re thinking this, this is normal, this is what’s real, and this is how to talk to your doctor about it. Because there are a lot of doctors and nurses who are still uncomfortable talking about these things. And to be able to say to your doctor, “Am I going to die? How long do I have?”
One thing that really struck me in my conversation with Sam is that he thought he had two or three weeks to live. Somehow in his mind, a cancer diagnosis meant he only had two or three weeks to live, where I on the other hand thought he had much longer, on the order of many months to a year or more depending on how he responded to treatment.
That conversation about prognosis was so important to have because it allowed me to really reassure him that in fact, he had longer to live than he thought. I shudder to think what would have happened if he had left my office thinking that he only had two or three weeks to live.
So my book, I encourage people to ask those questions and to have those conversations with loved ones and to not take no for an answer. So often, my doctor colleagues, my friends, will say “I don’t have a crystal ball. I don’t know what will happen in the future. Who can really know?”
And that’s all true. We’re not predictors into the future, but we often have a lot of information.
"Am I doing enough? Am I doing the right things?"
JS: So Steve, I was curious. A lot of us, as you were saying with those statistics, all of us have touched serious disease in one way or another. I’ve had family members with breast cancer, I have friends dealing with serious illness, and I’m curious about the caregiver side of it. That’s part of your book as well.
Not only as that plane drops for that patient, but as the plane drops for their friends and family around them. And I know I’ve been in that situation where I’m cooking meals, and bringing them to friends’ houses, and trying to feed them, and wondering, “Am I doing enough? Am I doing the right things?"
What’s a piece of advice for caregivers as they’re supporting people going through serious illness?
SP: That is such an important question. Your insight about how serious illness is not just about what the patient experiences, but about what their loved ones, family friends experience too. That’s why I have a whole chapter on caregiving in my book just to address this important issue.
I think what you said is really important. Don’t just ask what you can do, do something. There are so many ways to be helpful, bringing food, taking people to appointments, really doing some things that are helpful instead of sitting back and waiting is really the most helpful thing if you feel comfortable doing that.
"Imagine the kind of help you would want and that’s the kind of help you want to be."
I remember a friend of mine going through chemotherapy for breast cancer. She lost her hair and didn’t want to go out. Another friend of ours just came over and said “We’re going. I’m taking you and we’re going to find a wig. I’ve researched it and I’ve found the best place to go.” They went together and she found a wig that she really liked. And she felt really cared for. Then they went out to lunch and it was the first time she’d been out of the house in a few weeks. And that’s real help.
In order for that to happen, people do need to know what you’re going through, so letting friends and family know what you’re really going through is important. Some people want to keep it all private, they’re embarrassed, they’re ashamed, but there’s no shame. Serious illness is something that happens to people and getting help is important.
And then there’s being the help you want to be. Imagine the kind of help you would want and that’s the kind of help you want to be, and reaching out. This is a place where we need to have an honest conversation about do you want to be caregiver, can you be a caregiver. And sometimes it’s important for the patient to recognize that sometimes your family member isn’t up for it, and sometimes they are and they really want to do this.
It really does take a village, and you need to bring people together.
It’s often an evolutionary process of what works for people. I’ve often seen that bringing caregiver in, someone who is not a family member, can be just the best thing in the world. Incredible help and relief for everyone involved. They really become part of the family.
When my mom was sick with lung cancer, and she was home receiving hospice care, at first she was adamant, “No caregivers. I don’t want any strangers in my house, you guys can do it all.” One night she was getting out of bed to use the bathroom, and she fell, and she couldn’t get up. And my aunt couldn’t pick her up. This was the middle of the night, so they sat there together until the morning. And in the morning, my mom said, “You know, I think I need more help.”
And it was true, we needed more help. So we found someone who was such a wonderful caregiver, and they moved in and really became part of the family. And my mom loved her caregiver.
So recognizing that you do need the help, that no one person can do this alone, that it really does take a village, and that you need to bring people together. And it can be friends, it can be family, and sometimes it requires professional caregivers.
And recognizing that caregivers also need a break. You have to recognize that you can’t do it 24/7. It’s a very hard job, really rewarding, but it can be a really hard job. So making sure that you’re taking breaks and that you can rotate other people in.
The future of palliative care is what we call palliative care everywhere.
JS: Thank you, Steve. I’m going to ask one more question before we wrap it up. I really appreciate this super helpful insight in palliative care. What’s next for palliative care, the field, how does it keep advancing? Where do you hope it goes?
SP: The future of palliative care is what we call palliative care everywhere. It’s making sure that everyone who needs palliative care can get it. And what that’s going to require is real changes at the local level, within health care systems, to make this care available to everyone who needs it. In the way that we make flu shots available to everyone, we need to make palliative care available.
That means training doctors and nurses to be able to provide palliative care, and social workers and chaplains to be able to understand the basics of palliative care, pain management, talking with patients about their preferences and documenting those, providing support, spiritual support.
So that’s going to be essential that we make sure that this training is available and these skills are available to all doctors and nurses.