Neha Pathak, MD, FACP, DipABLM : Welcome to the WebMD Health Discovered podcast. I’m Dr Neha Pathak, WebMD’s Chief Physician Editor for Health and Lifestyle Medicine. What comes to mind when you hear the word hospice? Or palliative care? Do you consider hospice to be a last resort? Something that might be harmful to your loved one? Is it a failure on the part of medicine to heal someone? Or an expensive choice not available to most of us? Or even something that might speed up the dying process.

Today, we’re taking a step-by-step approach to hospice and palliative care to empower us with facts, answer our common questions, and offer accessible solutions if you’re on the precipice of making a challenging decision for yourself or a loved one. We’re clarify the terms hospice and palliative care, separate myths from facts, offer new perspective on what quality of life means, and how it can and will shift throughout our lifespan. 

And our guest will help us take a behind the scenes look at what actually occurs during end-of-life care planning. We’ll offer insights into the collaborative nature of palliative care teams and the pivotal role of caregivers. Whether you’re a patient, caregiver, or healthcare professional, this episode will equip you with valuable knowledge and inspire a deeper understanding of whole person care as we approach the end of our lives. 

We’re glad you’re here for this heartfelt discussion on navigating the challenges and embracing the support after a palliative and hospice care teams. But first, let me introduce my guest. Dr Neha Shah. Dr Shah is a friend and infectious disease doctor and palliative care physician. She’s a fellow of the Infectious Disease Society of America and a fellow of the American Academy of Hospice and Palliative Medicine. Welcome to the WebMD Health Discovered podcast, Dr Shah.

Neha Shashikant Shah, MD: Thank you Neha for having me here. 

Pathak: Before we jump into our conversation about what palliative care is, I'd like to take a moment just to ask about your own personal health discovery. So, what was your aha moment around your interest in being a palliative care provider and what really led you to shifting gears from infectious disease to palliative care?

Shah: Sometimes in medical school there's a quote that we hear, which is, “we cure sometimes, treat often, and comfort always” by Hippocrates.

And I never really appreciated what that meant until going through all of my medical training. I think as we learn throughout our medical journey, there are really thousands of illnesses that affect the human body, but only hundreds are really curable, and doctors really cannot fix everything.

And I think a lot of times in a medical training, we're taught that if we can't treat something or make something better, or even the worst outcome ever, which is death, that means that we failed at what we're doing. But I think really as doctors what we do is we help people live the best quality of life that they can with whatever they have.

And so that kind of frame shift was really important. And then that kind of takes me through my journey to where I am right now. The first day of intern year, I was assuming downstate in Brooklyn and Dr Jean McRae, who's our program director for residency, told us all that the classes before us all were really bad at palliative care. 

And so for me and my 35 colleagues, she really wanted to make sure that we had good training in palliative care and how to address symptoms, identify suffering, how to have a goals of care conversation. So, as we all graduated, we all really got many fellowships in the subject matter of palliative care. 

So no matter whatever specialty we all went off into or whatever we ended up doing with our lives, we were all really good at these things, which was important. I actually went into an infectious disease specialty, and I love it very much. And I have a special fondness for my patients that are living with HIV.

Because really when it comes to HIV and how they got it and kind of how the disease impacts them is a lot of what palliative care does in the end, because it really, as an HIV provider, and even as a palliative care provider, my focus is my patient as well as the disease process. And I think by addressing the person as a whole, really helps everything all around.

You know Shrek the movie talks about how people are onions and there are many layers to them. But that's so true because I think it's your life experiences. It's your education. It's your culture. It's your faith. It's so many different things that kind of shape who you are as a person and decisions you make.

And you really have to address all of that when it comes to making medical decisions to help match what your values are to the medical treatment that's being given.

Pathak: Could we take a step back and just help us understand what palliative care is? What hospice care is? How are they different?

Shah: That's a great question and that's something I get all the time as well. So really palliative care is when anyone has a chronic or serious illness and it's really addressing the symptoms that are coming from that. And so, a serious illness can be anything from cancer, heart disease, lung disease, kidney disease, Alzheimer's, ALS, multiple sclerosis, Parkinson's, addressing things that happen to a patient and a family when that happens. 

I want you to visualize a person. And say they're diagnosed with something that I've just said. Sometimes when someone is diagnosed with a serious illness, there are physical symptoms that happen from that illness, whether it's like pain, nausea, vomiting, depression, anxiety, shortness of breath.

There are sometimes spiritual needs that come up. I've had patients in the past say, “I think God is trying to punish me for something I've done a long time ago. And that's why this is happening to me right now.” Families are in distress. Say the person who's got sick is the primary caregiver and they can no longer work. Or there's even family distress that comes up with, say someone's diagnosed with something terminal and you know, they've not had a great relationship and they're trying to kind of make amends or sometimes there's money involved. There are also psychological things that happen to a patient as well, too. So addressing all of these things that happen to someone allows people to get treatment that they want to get and it doesn't really hinder all that.

So, palliative care works alongside the whole team that's taking care of a patient. We work alongside the specialists that are there taking care of them. Whether it's someone with cancer who's getting cancer therapy or someone with advanced heart failure that is now having to get maybe some inotropes to help their heart pump better, just working alongside everyone addressing needs along the way, because there are things that can pop up lot of the times.

Sometimes as disease progresses, symptoms get more and so we can address those symptoms more and a lot of specialists and primary care doctors kind of do what we're doing. This is like another aha moment where everyone secretly is a palliative care doctor because everyone is identifying, if someone's in distress or suffering or symptoms are starting to kind of show they're addressing that.

But sometimes when it gets to be too much for that primary care doctor or that specialist is when they kind of refer maybe to someone like me that can alleviate things a lot better. And so, I think while people are getting curative therapy and going to clinics, that's when palliative care is really important to help with quality of life.

And I think hospice is a different expression of that, but it's at a different time in life. In medicine, we can't treat or fix everything, as I said before, and it kind of goes back to that quote mentioned before. And so, when that happens, we focus more on people and their comfort.

And sometimes, people don't want to keep coming back to the hospital. They'd rather stay home. They would rather focus just kind of on quality of time rather than quantity of time. And that may be when hospice is kind of more appropriate for that. 

Pathak: And I think one of the things that I'd love to talk about and maybe myth bust around is that palliative care is only an option when there is no potential for improvement in your health trajectory. So, can you talk a little bit about whether or not that is an accurate way to think about what palliative care does?

Shah: So, I think this is like an old school shift. I think this is a lot of times in medical school, I think sometimes that's been taught to physicians and also just kind of taught in general. I think this is a big shift that's happening. I think it's very slow. I think right now, current practices, we're called right at the very end when someone is about to die and that's too late.

I think in my experience right now, we are called in when there's like a massive fire in a building and we can't put out the fire. It's like too late. So, I think oftentimes, sometimes when we are called in the picture, I think hospice is appropriate and that's why maybe it's kind of associated that palliative care is synonymous with hospice because that's just all we can do.

And that's what's synonymous at that time. And I think really palliative care needs to be started at time of diagnosis or time of crisis or time or time of something happening to help kind of make it so that it doesn't become a fire. 

Pathak: So tell me about what that first encounter with the team looks like, what that first encounter with the patient and their family might look like. 

Shah: So in my hospital, we've actually gone away from calling ourselves palliative care because I think I spend sometimes the first five minutes trying to reassure them that nothing bad is happening. So now we call ourselves supportive medicine because that's really what we are.

We're just like this extra layer of support that works along everyone. Usually before I go on, I have to kind of corral all the doctors that are taking care of a patient. So, I have to talk to all the different specialists. And sometimes people think that they're doing a good job of communicating, good and bad news, but reality sometimes is no, people are not very good at that, or they don't have the time to do so in the way they want. 

I think so much of medicine now has become so hyper specialized, you know, the cardiologist is only looking at the heart and the pulmonologist is only looking at the lung and the kidney doctor is only looking at the kidneys. And so, they kind of call me to quarterback, get everyone together, synthesize kind of what's going on and just make sure that people have an understanding of what's going on. 

But I always start out with asking people, do they understand what their prognosis is? What have the doctors been telling them about their conditions and what's going on.

And sometimes people don't want to know, and that's OK. I think a lot of what we do is just meeting people on their medical journey and just walking it with them. We talk about concerns that lie ahead. We talk about fears.

We talk about hopes. We talk about goals and priorities. We talk about what are people willing to sacrifice or not, and what kind of outcomes are unacceptable to you. We talk about what gives meaning to someone's life. And I also kind of talk about quality of life and what it means to them. And it means different things to different people.

I've had patients say, well, as long as I can eat ice cream and watch TV, I'm fine. I've had other people say, as long as I can hold the remote and pet my dog, I'm fine. They get used to new norms as diseases progress. And some people, when they get to that new norm, that may have been something where maybe five years ago they would have said, I never want to live like that. But once they're there, they're like, it's actually OK.

Quality of life can also be shifting. And I think that's why it's always good to kind of keep talking about that because it means different things at different times. We also talk about, if your health worsens, you know, what are your important goals if your health declines?

We talk about advanced care planning. You know, if you can't make medical decisions for yourself, who do you want to make these sometimes difficult decisions for you? We talk about what a good day looks like, and also what kind of information they want from the care team and about what may be coming.

So in a lot of ways, I think of this as a first date, just really kind of getting to know someone, and just learning about them, which for me is very rewarding, reminds me of why I went to medicine in the first place. 

Pathak: I just love to kind of get your thoughts on how you involve caregivers. Are you primarily thinking about the patient as your patient or are you thinking about the patient and their family as your patient?

Shah: Thank you for bringing that up, Neha, because usually whenever I meet with a patient and I kind of ask these questions of them, I also include the families in on conversations with permission to and share all of this with them as well, too. And you're right for a lot of people it does end up kind of being eye opening, especially if it comes to something like prognosis, because then I think it kind of helps people prepare for the future. 

And that's kind of part of what we do as well, too, is once we kind of talk about where we're at medically and options from there we extend this to like the home setting because that's where most people are.

And making sure we kind of build a village for patients and their families. There are so many different resources that are out there. And I think sometimes people just don't know what they are. And I think navigating that again, that's why it's important to have this medical doula that's there to help kind of define things, because there are things like home health and they kind of help for a short period of time with like a specific goal.

And a lot of times that may have to do with physical mobility may have to do with speech may have to do with, wound care, there is people that can come out to the home. like home palliative care. That's another option. They do once a month visits, they can be more often if needed. They're there to help with symptom management in the house. They're there to help kind of continue these kind of goals of care conversation that happens with medical treatment and.

Sometimes it's a way also convert the hospice down the line, if that's what's kind of medically appropriate. and they can also kind of quarterback from home too. So, as people are going to see their different specialists and going to different clinic visits, you know, they're there to help kind of keep all the specialists on the same page.

They usually will do like a report that they do from their home visit and send it to all the specialists. So then they kind of know what's going on in the home and kind of what they're seeing and assessing there too. Palliative care in the home they'll also have social workers that come out to the house to help with important documents, things like power of attorneys, living wills, advanced care directives, kind of make sure things are in order.

They also will have a chaplain that can come out to the house too to help address like any spiritual needs that are kind of coming up. So that's kind of one thing. The other thing that's kind of come about is integrated mobile home care. So this is something that kind of came about during the pandemic, where it's basically the primary care doctors coming out to the house.

They can do home visits Monday through Friday. They can do lab work at home. They can do imaging at home. They can also do some IV medications at home. Sa, there's a heart failure patient that gets really short of breath frequently. So they can do IV diuretics at home to help kind of alleviate, extra visits in the ER. Some of these companies can do IV antibiotics as well.

Pathak: So tell us a little bit about when that decision for hospice is made. Those considerations that would make you think, OK, this is someone I want to talk to about hospice care.

Shah: In this doctor patient journey, when we can't palliate in the hospital or clinic anymore, people may want to focus just being at home. And just focusing on them, what they're feeling. It's not about treating the number. It's just about living each day, the best that they can for as long as they can, then hospice may be an answer. Because usually when people are enrolling in hospice, at some point people may transition to end of life, but people want it to be peaceful.

They want it to be with dignity. They may not want to be on machines and life support. They just want to be surrounded by their family and their loved ones. 

Pathak: So with hospice, you're not necessarily doing the lab draws or you've sort of come to a decision where you're not going to go to the hospital or the emergency room for any sort of symptom management? You're going to rely on that to be done at home, or can you help us unpack that? 

Shah: So with hospice, they're not going to be focusing on the numbers. They're not going to be doing lab work. They're not going to be focusing on whatever the X-ray or the CAT scan is showing them. It's going to be about just listening to the patient. You know, what are you feeling? What are you going through? And what can I do to make that better?

Pathak: But with palliative care, you may still be undergoing treatment for your condition. You may still be coming to the hospital if needed. It's just really this additional layer of supportive services around you.

Shah: Correct. And palliative care also will still be addressing pain or shortness of breath and still addressing the symptoms. 

Pathak: Yeah, when we think about hospice, we forget that sometimes the very treatments that we're giving the medications are really, high intensity treatments for certain conditions can also bring along a lot of impediments to quality of life.

So sometimes when you remove that, your body actually can do OK. And when you're just sort of focused on managing the symptoms, which is why I find that my patients when we've sort of talked the route of hospice are just so much surprised by how much better they feel during that hospice time.

There's just sort of this emotional, physical uplift that I've noticed in some of my patients in hospice. 

Shah: You've said it perfectly there.

Pathak: I like to close all of my episodes with. Something bite size that someone can take away as they're listening to this conversation. So, what advice would you give to someone listening who may be a caregiver or maybe a patient who's considering palliative care or hospice?

Shah: I think for everyone, everyone should have an advanced care directive, especially if you're over the age of 18. And I think it's important to also kind of revisit this every year. This document kind of talks about like, who's going to be your voice if you can't speak for yourself.

You never know if something's going to happen, be a car accident, or you suddenly get a stroke, or suddenly you're diagnosed with cancer. I see too many people that are like in their 20s and 30s that are diagnosed with like metastatic cancer. We could probably do a whole podcast on like why this is happening.

You just never know what's going to happen. So it's always good to do that. You know there's so many things that we can do in medicine, but the one thing we do not have yet is mind reading technology. And so, we still kind of need to talk about what wishes are if something bad were to happen.

That's one piece of advice I would give everyone. I think it's also important to talk to your loved ones about quality of life and what it means to you. This is something that's not addressed in an advanced care directive. The advanced care directive only comes into play with something catastrophic has happened.

And like there's really nothing else in medicine that we can do. But there's a big gray zone things that can happen before then. So, it's always good to talk about that. Say you need to be on a ventilator, and you need to be on one for a short term period, most people are fine with that, but say, you can't get off the ventilator and you have to be on it for a longer period of time, and then you also have a feeding tube and you have to live in a facility. Are you OK with that? Some people aren't so you got to kind of always kind of keep that conversation going. And I think also, just for everyone, I think we have only this one life to live.

Just every day that you can see, eat, breathe and move, just be thankful and grateful. I think just be positive and appreciative of that. I think for people and families that are living with a serious or chronic condition, if someone ever comes to you and says that I'm from the palliative care team or the supportive medicine team, embrace them.

You now have a medical doula to kind of navigate whatever's going on. So that's, that's great. So don't be afraid. I think that's the biggest thing I want to make sure people know. I think also, talk to your physicians about quality of life and what you hope for. I think I want to empower people to corner their doctor and say, what are the risks and benefits of whatever you're suggesting? 

What is the best case and worst case scenario if I do or do not do something because that will also kind of help with informed medical decision making. And that will also give an opportunity for you to kind of channel the things that make you into a discussion. I would say also seek out palliative care if you feel like you're not getting the questions, answered, or if you feel like you're not getting good symptom management from whatever may be going on. There are clinics that are available sometimes in the outpatient setting. There are also home-based services that, you know, you can be referred to by your case manager or social worker, or even hopefully your primary care doctor knows if you're hospitalized and you feel like you don't know what's going on and no one's communicating with you, you can also ask for that service. 

There's a statistic that over 90 percent of hospitals that have 300 beds or more have a palliative care service that's inpatient. So, they're there. You may just need to ask for it and advocate for yourself. There's also a website called getpalliativecare.org, which will help you find resources in your community. 

And I think if you're a physician as well, I think just, you see a patient that is needing specialized attention that you can't really give, call up your palliative care team. We're there to help you.

Pathak: Thank you so much for being with us today. We’ve talked with Dr Neha Shah about her role within a palliative care and hospice team. She’s talked to us about what that team might look like in a hospital. But also offered us so much information about what we might be looking for if our loved one is outside of the hospital. What does outpatient hospice care look like? And I think the biggest takeaway for me is this type of care team approach is whole person care. This type of approach is something that we can all benefit from. And this is something that really helps us meet the needs of our loved one medically, spiritually, emotionally, psychologically, and helps us fill in all of the other gaps and questions that we might have. How do I help my loved one fill out a power of attorney? How do I help my loved one to get to an appointment if it’s very difficult for them to leave the house for labs?

Dr Shah helped us think of all of the resources we might call upon to access palliative care teams in our own homes and hospital. To find out more information about Dr Shah, check out our show notes.

Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered podcast.