Episode #39 Novel Approaches to Palliative Care with Delia Chiaramonte, MD
Caring for an individual with a serious medical diagnosis can be difficult for patients, their families, and caregivers. For some, a palliative care professional can make a big difference.On this episode, we welcome Dr. Delia Chiaramonte, an integrative, palliative care physician and medical educator, who helps seriously ill patients live their best life.
By going beyond symptom management, forward thinking palliative care professionals aim to develop a model of care that places the individual's physical, emotional, and spiritual wellbeing at the center.
Integrative palliative care combines conventional and complementary approaches. It has been shown to provide significant benefits to patients, including improved symptom management, better relationships with healthcare providers, and increased satisfaction with care.
In this episode, we discuss mind-body tools for symptom relief, experiencing joy while living with a serious condition, confronting the fear of mortality, the growing use of psychedelics in terminal care, the advantages of team-based care, and improving overall quality of care for individuals.
Please note, the show will not advise, diagnose, or treat medical conditions. Always seek the advice of your physician or healthcare provider for questions regarding your health.
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Dr. Victoria Maizes
Hi Andy.
Dr. Andrew Weil
Hi Victoria.
Dr. Victoria Maizes
Today, we have Dr. Delia Chiaramonte coming on. She is a hospice and palliative care physician.
Dr. Andrew Weil
I can't think of a more important topic for us to discuss. I think most people, not just health professionals, but all people should know about the availability of hospice care and the services they provide.
Dr. Victoria Maizes
And there seem to be a lot of misconceptions. So I'm really glad we're going to have an expert on who can relieve us of those myths.
Dr. Andrew Weil
Good.
Dr. Victoria Maizes
Let's get her on.
Intro Music
Dr. Victoria Maizes
Dr. Delia Chiaramonte is an integrative palliative medicine physician and a medical educator. She's also the founder of the Integrative Palliative Institute. She offers a positive doctoring program for physicians and teaches families how to help a seriously ill loved one live their best life. Dr. Chiaramonte is currently writing a book called Calming the Chaos: The Essential Guide for Families Facing a Serious Medical Condition.
Welcome, Delia.
Dr. Delia Chiaramonte
Thank you so much. And thank you for having me. I'm really excited to be here.
Dr. Victoria Maizes
Wonderful. We're happy to have you. I think it would be terrific to start with definitions. What is palliative care and how does someone qualify for it?
Dr. Delia Chiaramonte
Thank you so much for asking that question, almost everyone that I encounter has a different and often inaccurate view of what palliative care means. Palliative care is just symptom-focused care for people with serious illness, and that means physical symptoms, emotional symptoms, spiritual symptoms even. So it's not focused on cure. It's focused on well-being. But it's appropriate for anybody with a serious illness at diagnosis. So people often think it means end of life care. But it doesn't. It doesn't. It doesn't. It doesn't. It's not the same as hospice.
Dr. Delia Chiaramonte
Hospice care is part of palliative care. It is the last six months generally of someone's life, and it is philosophy quickly the same as palliative care, meaning it's all about the person's physical well-being, managing symptoms, all about their emotional well-being, their spiritual well-being, their family well-being. But it is focused towards the end of life.
Dr. Andrew Weil
what are the symptoms, the most difficult symptoms that you have to deal with?
Dr. Delia Chiaramonte
You know, what an interesting question. pain obviously is very common, the treatment of pain is so multifactorial as it often is for everybody. But when you have the distress associated with fear, sometimes at end of life, that becomes even a bigger component so there may be a muscular component to the pain, a cancer, you know, tissue component to the pain.
There may be a central sensitization component to the pain which is worsened by people's fears and anxieties, history of trauma, depression that may be unmanaged. So all of that soup. Nausea is really distressing to people. So even though they don't always come in complaining of it or reporting it, it's the thing that makes it hard to play with your grandkids.
And then fatigue, I would say, would be the other one with an overlay of tons of anxiety and perceived stress.
Dr. Victoria Maizes
So one of the things that I have heard said is that often people are not so much afraid of dying. They're afraid of the process of dying and they're afraid of pain. Where are we in 2023 with the approaches to pain? Can we guarantee to someone that they will have pain relief as they face the end of their life?
Dr. Delia Chiaramonte
So guarantees a strong word.
Dr. Victoria Maizes
Yes, it is.
Dr. Delia Chiaramonte
But, you know, in the ideal world, with the ideal providers, I would say, yes, we can. And the way that we do that is with this integrative palliative approach. So the philosophy of palliative medicine, which is focused on the mind body, spirit, well-being of the person using tools that are conventional tools, medicines, procedures, but also a bigger toolbox that might include acupuncture, guided imagery, various mind body tools, aromatherapy, massage, Reiki or other energy medicine kind of intervention.
And so when we look at all the tools manage the physical and emotional spiritual well-being, I do think that we can control people's pain. I personally have not encountered someone who could not ultimately have their pain controlled, but it does often take a combination of all those things, including medications, but not exclusively medications.
Dr. Victoria Maizes
You are pointing to one of the benefits of an integrative approach, in this case, integrative palliative or hospice, where your toolbox is so much bigger. What do you find yourself reaching for the most?
Dr. Delia Chiaramonte
It's the mind body tools that I find myself reaching for the most, and that is because, as we all know, pain is so multifactorial and all of the symptoms I mentioned before are all mushed together because anxiety makes nausea worse, anxiety makes sleep worse, which makes fatigue worse. And then if you don't sleep, your pain is worse.
And if your depression is uncontrolled, then your pain is worse. So it's hard even to separate them out as one thing. But the medications for pain are pretty good at managing the physiologic part of the pain. But if you have a big overlay of a history of PTSD, various kinds of traumas, even multiple little traumas, you know, it doesn't have to be a huge trauma, but multiple traumas that can ramp up your nervous system and make your anxiety worse and stress worse.
When people say, I'm sorry, it looks like you might be coming to the end of your life that makes pain worse and makes the nausea worse and makes fatigue worse. It makes neuropathy worse. So when we can use the mind body tools to decrease the sympathetic nervous system tone, manage anxiety, a lot of things seem to get better all at once.
Dr. Andrew Weil
How important do you think touch is in what you do?
Dr. Delia Chiaramonte
That's such a great question. Huge. And for a bunch of different reasons, partly because it helps with relaxation. Partly because being someone who's facing their mortality is lonely and scary and human connection is really important for wellbeing. And touch facilitates that, partly because when you have a thing happening to your body, you may have anger at your body, your body may look different, maybe there's a breast gone or a limb gone, or you might have a bag that you're pooping into.
And so people start to feel negative feelings towards their body, and having someone touch their body can be really healing. And then in certain populations, like people with delirium or dementia who can't really do mind body interventions, then touch is even more important.
Dr. Victoria Maizes
So you're describing a lot of psychological needs beyond the physical. And I know one of the wonderful things about hospice in particular is that the team is much broader than a physician. Can you talk a little bit about the best ways to manage those psychological needs and what the team can provide?
Dr. Delia Chiaramonte
Absolutely. That's one of the greatest things about hospice. And really, if all medicine were like hospice care, it would be fantastic because it is a totally team-based approach. There's a physician, but the nurse is probably the center piece of the hospice team. Then there's social worker, a chaplain, home health aide, often volunteers, sometimes a pharmacist, sometimes a music therapist, sometimes, an acupuncturists, sometimes a mind body specialist.
And the nice thing is that the team gets together to talk about every patient. So if someone says, you know, this patient can't sleep, the doctor isn't going to be the one who says, “Oh, I have a pill for that”. Somebody might say, Oh, well, I know I can't sleep.
I'm the chaplain. And we had a conversation about things that he'd done in his life, and he's afraid and now he's a little bit afraid of the afterlife and that's why he's having trouble sleeping. And if you just left it to the doctor, they probably wouldn't figure that out. So the whole team gets information from the patient and the family gets together and talks about, well, okay, here's the emotional component, here's the physical component.
You know, their pain is not controlled. Let's try to fix that so they can sleep. Here's the spiritual component. Maybe the home health aide says, they keep it really light and loud at night. So maybe we should talk to the family about making it a more sleep conducive environment, for example. So everybody has their piece. And all together we do a much better job than any one of us alone.
Dr. Victoria Maizes
There's so much that I think is amazing. As you said, if all care was like that and yet people have misconception about hospice, they think, “Oh, it means that you're going someplace” as opposed to usually, of course, you stay home. They think that it means you're giving up and that you're about to die. Actually, there's a little bit of evidence that suggests that people who enter a hospice live longer.
Dr. Andrew Weil
I've run into physicians who are reluctant to send patients to hospice for that reason, they don't want the patients to live longer.
Dr. Victoria Maizes
Oh, wow.
Dr. Andrew Weil
Yeah.
Dr. Victoria Maizes
Wow. So can you, burst some of the myths? Can you talk about some of the most common things that people just misunderstand about hospice?
Dr. Delia Chiaramonte
100%. So it is absolutely not true that hospices for the last days or moments of someone's life. Ideally, someone spends six months on hospice because the focus of hospice and this is what people get wrong. The focus of hospice is living. Who are you? What's important to you? What are you not able to do because you feel lousy? And what can we do about that lousy? So you can go live your life for however long you have, like. Like all of us should be. Yes, right. Like all of us.
Dr. Andrew Weil
So what is the difference between home hospice and, you know, an inpatient facility?
Dr. Delia Chiaramonte
Yeah, that's a great question too. A part of why people don't like hospice is they think it's a place because we do sometimes say, oh, he's going to hospice as though he's going to a place. But as you guys mentioned, that most almost everybody is staying home. So hospice is by far most of the time delivered at home.
And the team comes to the person's home, which is part of what's so amazing about hospice. Most of health care, you don't get the whole team coming to your house. There are inpatient hospice facilities, but in palliative care, we think of those as hospice hospitals. Basically, they are only there for people whose symptoms can't be managed at home.
And so the difference is there are nurses overnight. They can give you intravenous or IM medication, which maybe the family isn't going to do. But one of the greatest things about hospice is that there's overnight call system. So if you're at home, your family's caring for you, you're on a hospice team and you wake up in pain and the family doesn't know what to do.
They call the hospice a nurse will call on the phone and if they can't work it out over the phone, the on call nurse will come to your house at two in the morning. Who gets that and manage your care with the doctor on the on the phone. Sometimes overnight per call they'll manage your symptoms if they can't. So the nurse has tried everything they can. They have all the medicines they tried and you're still suffering. They don't want to let people suffer. So in that case, they might transfer them to an inpatient hospice temporarily, often.
But that is almost never happens. Tons of hospice patients never see an inpatient unit because their symptoms are managed at home.
Dr. Victoria Maizes
You know, my father passed away while under hospice care, and I have to say it was a beautiful death. I mean, people don't necessarily use that language so commonly about death, but my sisters and I were all present. His doctor was present just by kind of happenstance. That doesn't always happen. We were singing to him, you know, he was in his bed. He was comfortable. I remember at the moment that he died, he seemed to have this expression of wonder and made this “ah” sound. And it gave me great comfort. And I have been present at many deaths in hospital as a doctor, I would not call most of them beautiful deaths.
Dr. Andrew Weil
No.
Dr. Delia Chiaramonte
Exactly right. And we actually do use those words in palliative care, and it's one of our metrics that we're shooting for. So if someone can be cured of a bad thing, of course they should be cured. If their life can be meaningfully prolonged, of course, they should take aggressive treatments to make that happen. But once that's not an option. And unfortunately, there are things that we can't cure and times when there is no medicine to prolong someone's life meaningfully. So in that case, just giving them strong medications that aren't going to meaningfully change their outcome and sticking them in a hospital or an ICU with painful interventions that decreases their quality of life. So once we know that there's not something really aggressive that's going to meaningfully cure someone or prolong their life by a long time, then we focus on quality, including having a good death, which means surrounded by your people in a place where you feel safe and familiar and comfortable with the things that are meaningful to you, the things you can see. You can hear that you can smell, that you can feel so that you feel as calm and peaceful as possible. And you gather your people and you share laughter. It doesn't have to be just right. Right. Laughter and jokes and stories from life and pictures and music and. And smell. Incense or aromatherapy, if that's important to you. There's so many ways to make that a really reverent time.
Dr. Andrew Weil
Yeah. How informed do you feel health care professionals are about hospice services and their availability and how to take advantage of them.
Dr. Delia Chiaramonte
I will try to be polite in my answer.
Dr. Victoria Maizes
I think you just answered.
Dr. Delia Chiaramonte
Poorly informed. Overall, I would say poorly informed, which is a shame. It's such a shame.
Dr. Victoria Maizes
So given that, can you share what you would consider the most effective language to introduce this concept? Because I do think that it's hard for doctors. I mean, we're so trained to prolong life if we care to help someone get well if they can. And I think often we don't have the best language when we're shifting our priorities and our approach.
Dr. Delia Chiaramonte
Absolutely. And before I answer that question, which I love, I love that question. I do want to say that we bring something to as the physicians, the clinicians, our own sense of failure, our own sense of anxiety. Maybe we have some trauma around someone that we love dying that we bring too. So we're not a blank slate either.
Right. Sometimes we impose those discomfort feelings on the patient and the family, in the environment. That's part of the trouble, I think. It's not just education, but that's part of it. So here's how I do it when I am seeing a palliative care patient, if the oncologist, let's say, says we've tried all the things and I actually don't think that I have anything else that is going to meaningfully prolong this person's life.
Here's what I would say. So there's a program that has experts in managing patients who are just like you, who have disease, just like you do, who have symptoms just like you do. They're experts at managing pain and fatigue and nausea. They're experts at helping talk to family members and explain to children or other family members about what's going on.
They're experts at supporting you and helping you if you're having anxiety or stress or emotional feelings about what's going on, they can help you spiritually, even they can help you figure out where to be in the house. They can bring you a hospital bed so that you can be in the place in your home, you know, maybe by your birdfeeder where you can look out at your garden.
They can help everybody in the family cope with what's going on and then they're on call. So if overnight you have symptoms and your loved one, is it sure what to do? You can call them. They'll come to your house in the middle of the night and they will help you stay with you until you feel better. And it's covered by insurance.
So does this sound like the kind of program that you might want to know about? And almost everybody says, yes, I want that. That sounds great.
And only then do I say fantastic. I think it would be perfect for you. That program is called Hospice. And and in my experience, people are much more comfortable once you start that way, as opposed to, well, it's not working. Looks like it's time for hospice, which is sometimes the way it's portrayed.
Dr. Victoria Maizes
I know it's been in the news in the past couple of weeks that former President Jimmy Carter, has just elected to go into hospice. And I actually was a little surprised because, you know, the last news that I really had heard about his health was he had announced that he was going to be dying because he had metastatic brain cancer and he was at peace with that.
And then he responded to an immune therapy and I think that was four or five years ago. And now he has announced that he is going into hospice. I did not hear that he had a condition that was determining that he had six months to live, which I understand is one of the rules, but that may just not have been made public.
Can you talk about maybe the example that he's setting for the nation? Because certainly it's elevated the conversation about hospice.
Dr. Delia Chiaramonte
I'm sorry for him and his family, but I really am happy that he is helping people understand what this is about. Because I think that when he when it was first announced that he was on hospice, people thought that he would have died within 24 hours because that's what people think it means.
You're dying right now. Go to hospice. When in fact, that's not what it means. As soon as you qualify for hospice, you probably should elect hospice. Meaning if his I don't know this for sure, but if his immunotherapy is no longer working, which is what I'm going to assume. So generally, people, if they try immunotherapy and it works, as long as it works, they keep taking it.
If the cancer begins to grow, despite that, there comes a time where are there really isn't anything that's meaningfully likely to change the outcome. And even if at that point you feel pretty good hospice is the right thing because they ideally people open the door to the hospice nurse themselves. So you shouldn't think that means there's a person in bed who has one foot in the grave.
Ideally, they open the door and the person says, How is your pain? Are you pooping? Okay, are you able to get around? Do you want me to talk to your daughter? You know, do you need more medicines? How's it going? And so ideally, people do spend months on hospice getting all of the benefits. And so I think he's modeling that, which I think is terrific. It's a it's a service.
Dr. Andrew Weil
Here's a question do you see a role for psychedelics therapy in hospice care?
Dr. Delia Chiaramonte
I absolutely do. And I'm fascinated by this topic it has been just personally striking me that maybe I need to learn how to do this. I'm very interested in this because there I have not done it myself, but I have spoken to patients who have done this and they have a completely different view of the universe.
And when people say they're afraid of dying, they tend to mean one, two, or three of these three things. One is what you said before Victoria, which is the process, will I have pain? Will you know what's going to happen? What's it going to look like? That's part of it. So the fear around that, I think psychedelics may lift some of that.
But the second thing that people worry about sometimes is the afterlife. And maybe because none of us know, maybe because they were taught something in childhood and then they straight away or maybe they have an idea of the afterlife, but they did some bad things and they think maybe it's not going to go so well for them. So there's this kind of looming fear of the afterlife, which no one, of course, can answer for them.
I think psychedelics have a huge potential benefit. There to give this feeling, which seems to happen for many people, that the universe is okay, like it's what's good, things are good and I have seen people say that they felt relieved about the fact that some heavy thing was going to happen after death. And then the third thing that sometimes people have fears about is will their families be okay?
Maybe it doesn't address that one as much. But I think the fear now and the fear of the afterlife, I think it's a really, really interesting new development and I hope we see more of it as that science evolves.
Dr. Victoria Maizes
Andy, what are your thoughts about psychedelics in end of life? I'm curious.
Dr. Andrew Weil
Well, you know, some of the earliest research that was done with LSD and psilocybin, this was in the late fifties and early sixties, was with terminal cancer patients and there were very good results. In terms of less need for opioids, Patients found it easier to be with their families. They were comfortable with the idea of approaching death, so the outcomes were extremely positive.
Dr. Victoria Maizes
So since hospice care in the home, do you first see hospice physicians prescribing LSD or psilocybin or MDMA? how do you see that unfolding as we move towards legalization, which does look like it's about to happen?
Dr. Andrew Weil
Well, the great need would be for guides who are trained in their use, and that would not be, you know, ordinary hospice people. They would have to be a special class of people who were trained in the appropriate use of psychedelics.
Dr. Victoria Maizes
They need those psychedelic experience and end of life experience presumably both. Yeah.
Dr. Delia Chiaramonte
I would imagine, though, that as these training programs become more prevalent, that they'll be significant end of life training as part of psychedelic training because it's.
Dr. Andrew Weil
About the head of palliative care at the University of Arizona. A woman I think she was in her sixties came to ask to have dinner with me a couple of years ago, and she said it just killed her, that she could not use psychedelics in those settings because she knew from personal experience how valuable they could be.
Dr. Delia Chiaramonte
So what do you think is the landscape for making them available in the clinical context?
Dr. Andrew Weil
Well, it's coming. I think, you know that MDMA is going to be made available soon for the treatment of PTSD, psilocybin, for treatment of drug resistant depression. So I think once that begins to happen, they'll be moved out of schedule one and become available for more uses.
Dr. Delia Chiaramonte
That's great. And both of those things, by the way, are really relevant in the palliative care context not just end of life, although certainly end of life, but in doing palliative care and a cancer center, which is where I was most recently, I was shocked by something. So either everybody in the universe has trauma, or trauma somehow contributes to cancer because almost all of my patients, when you just dug a little bit, had trauma and it informs how they cope and how anxious they are and what their nervous system does and if they can sleep or not, and if they have central sensitization making their pain worse.
So it's just so folded into the whole experience, as is depression. So since psychedelics can help with both of those things, I think even just from that perspective, forget even thinking about what happens after death. I think they're appropriate.
Dr. Andrew Weil
I inclined toward the former hypothesis that everyone has trauma.
Dr. Delia Chiaramonte
Yeah, that could be so.
Dr. Victoria Maizes
Andy, this is a little off the topic of hospice and palliative care, but if that's the case, doesn't it seem that it would be better to address that trauma before the end of life so that people could have a good life one way?
Dr. Andrew Weil
Sure one of our colleagues, Deborah Coryell, I remember her saying when she was teaching a workshop, I think on grief, and a woman in the workshop started going on about her family and how dysfunctional it was and giving all these example. And Deaver interrupted her and said, You're from a family. That's all you need to say.
Dr. Victoria Maizes
Yeah. Yeah. The family unit, which is both a source of probably great joy, but also at times great. Yes. Thank you for that word.
Dr. Delia Chiaramonte
There is one thing I wanted to share too, which I personally found really surprising. So I was a family doctor first way back when, just a regular family doctor. And then I did some hospice work on the side and I was shocked that in general, general, the hospice patients were happier than my family medicine patients. So the family medicine patients, many of them were coming.
I can't sleep. I have headaches, my jaw hurts, my chest hurt, my neck hurts. I must have something terrible. We would look for all the things that it didn't have anything terrible. They had life, right? It was hard. They were poor. It was hard. Yeah. And then the hospice patients who, if you believe what they taught us in medical school, you would think they would be miserable.
Right? Because we were sort of taught that you make people healthy and then they're better, they're happy, and then when they're sick, they're not happy. But when you're facing mortality, you sometimes live your life differently and you say, that guy's a jerk and I don't want to talk to him anymore. And I hate volunteering at that place. I'm not doing it anymore.
I love my garden and I'm going to spend more time there and I want to play with dogs because that fills me up. And people reshape their life to be all about the things they love. And it turns out when you do that, you get happier.
Dr. Victoria Maizes
And I have to say that, yes, we should all do that. I have to say in my integrative medicine practice, I've experienced that with patients who come in with cancer and I find that that saying don't sweat the small stuff, they stop sweating the small stuff and they, as you say, reprioritize and often they are quite a bit happier.
Dr. Delia Chiaramonte
Yeah. And that's why people sometimes say, oh, palliative care isn't that depressing? And I feel like, oh no, it is the happiest specialty in the world. It relieves you of 90% of your neuroses. Because when you see other people going through stuff and changing their life and being happier, you can't help but self-reflect and say, Hey, how about I make those changes before I get cancer?
And you don't care as much about the small stupid things because you see, you see what can happen at any minute. That could be any of our stories, but it isn't today, so oh my gosh, how grateful am I for that? And look how well it works. Even people who are on hospice can reshape their life and make themselves happy. So why don't I do that?
Dr. Victoria Maizes
Now does this relate to your positive doctoring work?
Dr. Delia Chiaramonte
Yes. Because in palliative care, but also in all doctoring, it is so much about the connection of the doctor and all the health care providers and the patient and family all together. And so thinking that we are inert and then we just go do things to patients is really not the way it works. We affect each other, even from the energy perspective, from the mirror neuron perspective.
But even just from a human perspective, we impact each other. And so when we're learning about these kinds of things, reshaping your life so that you are living in how you want, yes, we should tell our patients that. But who else should we tell us when we're practicing managing central sensitization, turning down our sympathetic nervous system tone, managing anxiety, we should learn it first for us so that we bring the right energy into the room and then we can teach it to patients so that they can help manage their own distress.
So it is so connected and combined, and the skills should come into our brain, in my opinion, in two tracks, one for us, one for the patient, so that we are sharing healing from a really integrated place and not just the frontal lobe place.
Dr. Victoria Maizes
Well, Delia thank you for sharing all of your wisdom about palliative care, hospice, how to integrate who we are with what we do. So thank you so very much for being on Body of Wonder.
Dr. Andrew Weil
Thank you. And Victoria, let me ask you a final question. Do we have adequate information in our fellowship curriculum about end of life care and hospice care?
Dr. Victoria Maizes
We definitely do cover it and we've had quite a few fellows over the year who are hospice physicians. I sometimes say that hospice is the best unknown secret place for people to practice integrative medicine because you actually have a lot of time.
And time is often the rate limiting step for integrative medicine. But in hospice, people have time to spend with patients.
Dr. Delia Chiaramonte
Absolutely.
Dr. Andrew Weil
Thank you, Delia.
Dr. Delia Chiaramonte
Thank you so much for having me. I really appreciate this conversation.
Hi Andy.
Dr. Andrew Weil
Hi Victoria.
Dr. Victoria Maizes
Today, we have Dr. Delia Chiaramonte coming on. She is a hospice and palliative care physician.
Dr. Andrew Weil
I can't think of a more important topic for us to discuss. I think most people, not just health professionals, but all people should know about the availability of hospice care and the services they provide.
Dr. Victoria Maizes
And there seem to be a lot of misconceptions. So I'm really glad we're going to have an expert on who can relieve us of those myths.
Dr. Andrew Weil
Good.
Dr. Victoria Maizes
Let's get her on.
Intro Music
Dr. Victoria Maizes
Dr. Delia Chiaramonte is an integrative palliative medicine physician and a medical educator. She's also the founder of the Integrative Palliative Institute. She offers a positive doctoring program for physicians and teaches families how to help a seriously ill loved one live their best life. Dr. Chiaramonte is currently writing a book called Calming the Chaos: The Essential Guide for Families Facing a Serious Medical Condition.
Welcome, Delia.
Dr. Delia Chiaramonte
Thank you so much. And thank you for having me. I'm really excited to be here.
Dr. Victoria Maizes
Wonderful. We're happy to have you. I think it would be terrific to start with definitions. What is palliative care and how does someone qualify for it?
Dr. Delia Chiaramonte
Thank you so much for asking that question, almost everyone that I encounter has a different and often inaccurate view of what palliative care means. Palliative care is just symptom-focused care for people with serious illness, and that means physical symptoms, emotional symptoms, spiritual symptoms even. So it's not focused on cure. It's focused on well-being. But it's appropriate for anybody with a serious illness at diagnosis. So people often think it means end of life care. But it doesn't. It doesn't. It doesn't. It doesn't. It's not the same as hospice.
Dr. Delia Chiaramonte
Hospice care is part of palliative care. It is the last six months generally of someone's life, and it is philosophy quickly the same as palliative care, meaning it's all about the person's physical well-being, managing symptoms, all about their emotional well-being, their spiritual well-being, their family well-being. But it is focused towards the end of life.
Dr. Andrew Weil
what are the symptoms, the most difficult symptoms that you have to deal with?
Dr. Delia Chiaramonte
You know, what an interesting question. pain obviously is very common, the treatment of pain is so multifactorial as it often is for everybody. But when you have the distress associated with fear, sometimes at end of life, that becomes even a bigger component so there may be a muscular component to the pain, a cancer, you know, tissue component to the pain.
There may be a central sensitization component to the pain which is worsened by people's fears and anxieties, history of trauma, depression that may be unmanaged. So all of that soup. Nausea is really distressing to people. So even though they don't always come in complaining of it or reporting it, it's the thing that makes it hard to play with your grandkids.
And then fatigue, I would say, would be the other one with an overlay of tons of anxiety and perceived stress.
Dr. Victoria Maizes
So one of the things that I have heard said is that often people are not so much afraid of dying. They're afraid of the process of dying and they're afraid of pain. Where are we in 2023 with the approaches to pain? Can we guarantee to someone that they will have pain relief as they face the end of their life?
Dr. Delia Chiaramonte
So guarantees a strong word.
Dr. Victoria Maizes
Yes, it is.
Dr. Delia Chiaramonte
But, you know, in the ideal world, with the ideal providers, I would say, yes, we can. And the way that we do that is with this integrative palliative approach. So the philosophy of palliative medicine, which is focused on the mind body, spirit, well-being of the person using tools that are conventional tools, medicines, procedures, but also a bigger toolbox that might include acupuncture, guided imagery, various mind body tools, aromatherapy, massage, Reiki or other energy medicine kind of intervention.
And so when we look at all the tools manage the physical and emotional spiritual well-being, I do think that we can control people's pain. I personally have not encountered someone who could not ultimately have their pain controlled, but it does often take a combination of all those things, including medications, but not exclusively medications.
Dr. Victoria Maizes
You are pointing to one of the benefits of an integrative approach, in this case, integrative palliative or hospice, where your toolbox is so much bigger. What do you find yourself reaching for the most?
Dr. Delia Chiaramonte
It's the mind body tools that I find myself reaching for the most, and that is because, as we all know, pain is so multifactorial and all of the symptoms I mentioned before are all mushed together because anxiety makes nausea worse, anxiety makes sleep worse, which makes fatigue worse. And then if you don't sleep, your pain is worse.
And if your depression is uncontrolled, then your pain is worse. So it's hard even to separate them out as one thing. But the medications for pain are pretty good at managing the physiologic part of the pain. But if you have a big overlay of a history of PTSD, various kinds of traumas, even multiple little traumas, you know, it doesn't have to be a huge trauma, but multiple traumas that can ramp up your nervous system and make your anxiety worse and stress worse.
When people say, I'm sorry, it looks like you might be coming to the end of your life that makes pain worse and makes the nausea worse and makes fatigue worse. It makes neuropathy worse. So when we can use the mind body tools to decrease the sympathetic nervous system tone, manage anxiety, a lot of things seem to get better all at once.
Dr. Andrew Weil
How important do you think touch is in what you do?
Dr. Delia Chiaramonte
That's such a great question. Huge. And for a bunch of different reasons, partly because it helps with relaxation. Partly because being someone who's facing their mortality is lonely and scary and human connection is really important for wellbeing. And touch facilitates that, partly because when you have a thing happening to your body, you may have anger at your body, your body may look different, maybe there's a breast gone or a limb gone, or you might have a bag that you're pooping into.
And so people start to feel negative feelings towards their body, and having someone touch their body can be really healing. And then in certain populations, like people with delirium or dementia who can't really do mind body interventions, then touch is even more important.
Dr. Victoria Maizes
So you're describing a lot of psychological needs beyond the physical. And I know one of the wonderful things about hospice in particular is that the team is much broader than a physician. Can you talk a little bit about the best ways to manage those psychological needs and what the team can provide?
Dr. Delia Chiaramonte
Absolutely. That's one of the greatest things about hospice. And really, if all medicine were like hospice care, it would be fantastic because it is a totally team-based approach. There's a physician, but the nurse is probably the center piece of the hospice team. Then there's social worker, a chaplain, home health aide, often volunteers, sometimes a pharmacist, sometimes a music therapist, sometimes, an acupuncturists, sometimes a mind body specialist.
And the nice thing is that the team gets together to talk about every patient. So if someone says, you know, this patient can't sleep, the doctor isn't going to be the one who says, “Oh, I have a pill for that”. Somebody might say, Oh, well, I know I can't sleep.
I'm the chaplain. And we had a conversation about things that he'd done in his life, and he's afraid and now he's a little bit afraid of the afterlife and that's why he's having trouble sleeping. And if you just left it to the doctor, they probably wouldn't figure that out. So the whole team gets information from the patient and the family gets together and talks about, well, okay, here's the emotional component, here's the physical component.
You know, their pain is not controlled. Let's try to fix that so they can sleep. Here's the spiritual component. Maybe the home health aide says, they keep it really light and loud at night. So maybe we should talk to the family about making it a more sleep conducive environment, for example. So everybody has their piece. And all together we do a much better job than any one of us alone.
Dr. Victoria Maizes
There's so much that I think is amazing. As you said, if all care was like that and yet people have misconception about hospice, they think, “Oh, it means that you're going someplace” as opposed to usually, of course, you stay home. They think that it means you're giving up and that you're about to die. Actually, there's a little bit of evidence that suggests that people who enter a hospice live longer.
Dr. Andrew Weil
I've run into physicians who are reluctant to send patients to hospice for that reason, they don't want the patients to live longer.
Dr. Victoria Maizes
Oh, wow.
Dr. Andrew Weil
Yeah.
Dr. Victoria Maizes
Wow. So can you, burst some of the myths? Can you talk about some of the most common things that people just misunderstand about hospice?
Dr. Delia Chiaramonte
100%. So it is absolutely not true that hospices for the last days or moments of someone's life. Ideally, someone spends six months on hospice because the focus of hospice and this is what people get wrong. The focus of hospice is living. Who are you? What's important to you? What are you not able to do because you feel lousy? And what can we do about that lousy? So you can go live your life for however long you have, like. Like all of us should be. Yes, right. Like all of us.
Dr. Andrew Weil
So what is the difference between home hospice and, you know, an inpatient facility?
Dr. Delia Chiaramonte
Yeah, that's a great question too. A part of why people don't like hospice is they think it's a place because we do sometimes say, oh, he's going to hospice as though he's going to a place. But as you guys mentioned, that most almost everybody is staying home. So hospice is by far most of the time delivered at home.
And the team comes to the person's home, which is part of what's so amazing about hospice. Most of health care, you don't get the whole team coming to your house. There are inpatient hospice facilities, but in palliative care, we think of those as hospice hospitals. Basically, they are only there for people whose symptoms can't be managed at home.
And so the difference is there are nurses overnight. They can give you intravenous or IM medication, which maybe the family isn't going to do. But one of the greatest things about hospice is that there's overnight call system. So if you're at home, your family's caring for you, you're on a hospice team and you wake up in pain and the family doesn't know what to do.
They call the hospice a nurse will call on the phone and if they can't work it out over the phone, the on call nurse will come to your house at two in the morning. Who gets that and manage your care with the doctor on the on the phone. Sometimes overnight per call they'll manage your symptoms if they can't. So the nurse has tried everything they can. They have all the medicines they tried and you're still suffering. They don't want to let people suffer. So in that case, they might transfer them to an inpatient hospice temporarily, often.
But that is almost never happens. Tons of hospice patients never see an inpatient unit because their symptoms are managed at home.
Dr. Victoria Maizes
You know, my father passed away while under hospice care, and I have to say it was a beautiful death. I mean, people don't necessarily use that language so commonly about death, but my sisters and I were all present. His doctor was present just by kind of happenstance. That doesn't always happen. We were singing to him, you know, he was in his bed. He was comfortable. I remember at the moment that he died, he seemed to have this expression of wonder and made this “ah” sound. And it gave me great comfort. And I have been present at many deaths in hospital as a doctor, I would not call most of them beautiful deaths.
Dr. Andrew Weil
No.
Dr. Delia Chiaramonte
Exactly right. And we actually do use those words in palliative care, and it's one of our metrics that we're shooting for. So if someone can be cured of a bad thing, of course they should be cured. If their life can be meaningfully prolonged, of course, they should take aggressive treatments to make that happen. But once that's not an option. And unfortunately, there are things that we can't cure and times when there is no medicine to prolong someone's life meaningfully. So in that case, just giving them strong medications that aren't going to meaningfully change their outcome and sticking them in a hospital or an ICU with painful interventions that decreases their quality of life. So once we know that there's not something really aggressive that's going to meaningfully cure someone or prolong their life by a long time, then we focus on quality, including having a good death, which means surrounded by your people in a place where you feel safe and familiar and comfortable with the things that are meaningful to you, the things you can see. You can hear that you can smell, that you can feel so that you feel as calm and peaceful as possible. And you gather your people and you share laughter. It doesn't have to be just right. Right. Laughter and jokes and stories from life and pictures and music and. And smell. Incense or aromatherapy, if that's important to you. There's so many ways to make that a really reverent time.
Dr. Andrew Weil
Yeah. How informed do you feel health care professionals are about hospice services and their availability and how to take advantage of them.
Dr. Delia Chiaramonte
I will try to be polite in my answer.
Dr. Victoria Maizes
I think you just answered.
Dr. Delia Chiaramonte
Poorly informed. Overall, I would say poorly informed, which is a shame. It's such a shame.
Dr. Victoria Maizes
So given that, can you share what you would consider the most effective language to introduce this concept? Because I do think that it's hard for doctors. I mean, we're so trained to prolong life if we care to help someone get well if they can. And I think often we don't have the best language when we're shifting our priorities and our approach.
Dr. Delia Chiaramonte
Absolutely. And before I answer that question, which I love, I love that question. I do want to say that we bring something to as the physicians, the clinicians, our own sense of failure, our own sense of anxiety. Maybe we have some trauma around someone that we love dying that we bring too. So we're not a blank slate either.
Right. Sometimes we impose those discomfort feelings on the patient and the family, in the environment. That's part of the trouble, I think. It's not just education, but that's part of it. So here's how I do it when I am seeing a palliative care patient, if the oncologist, let's say, says we've tried all the things and I actually don't think that I have anything else that is going to meaningfully prolong this person's life.
Here's what I would say. So there's a program that has experts in managing patients who are just like you, who have disease, just like you do, who have symptoms just like you do. They're experts at managing pain and fatigue and nausea. They're experts at helping talk to family members and explain to children or other family members about what's going on.
They're experts at supporting you and helping you if you're having anxiety or stress or emotional feelings about what's going on, they can help you spiritually, even they can help you figure out where to be in the house. They can bring you a hospital bed so that you can be in the place in your home, you know, maybe by your birdfeeder where you can look out at your garden.
They can help everybody in the family cope with what's going on and then they're on call. So if overnight you have symptoms and your loved one, is it sure what to do? You can call them. They'll come to your house in the middle of the night and they will help you stay with you until you feel better. And it's covered by insurance.
So does this sound like the kind of program that you might want to know about? And almost everybody says, yes, I want that. That sounds great.
And only then do I say fantastic. I think it would be perfect for you. That program is called Hospice. And and in my experience, people are much more comfortable once you start that way, as opposed to, well, it's not working. Looks like it's time for hospice, which is sometimes the way it's portrayed.
Dr. Victoria Maizes
I know it's been in the news in the past couple of weeks that former President Jimmy Carter, has just elected to go into hospice. And I actually was a little surprised because, you know, the last news that I really had heard about his health was he had announced that he was going to be dying because he had metastatic brain cancer and he was at peace with that.
And then he responded to an immune therapy and I think that was four or five years ago. And now he has announced that he is going into hospice. I did not hear that he had a condition that was determining that he had six months to live, which I understand is one of the rules, but that may just not have been made public.
Can you talk about maybe the example that he's setting for the nation? Because certainly it's elevated the conversation about hospice.
Dr. Delia Chiaramonte
I'm sorry for him and his family, but I really am happy that he is helping people understand what this is about. Because I think that when he when it was first announced that he was on hospice, people thought that he would have died within 24 hours because that's what people think it means.
You're dying right now. Go to hospice. When in fact, that's not what it means. As soon as you qualify for hospice, you probably should elect hospice. Meaning if his I don't know this for sure, but if his immunotherapy is no longer working, which is what I'm going to assume. So generally, people, if they try immunotherapy and it works, as long as it works, they keep taking it.
If the cancer begins to grow, despite that, there comes a time where are there really isn't anything that's meaningfully likely to change the outcome. And even if at that point you feel pretty good hospice is the right thing because they ideally people open the door to the hospice nurse themselves. So you shouldn't think that means there's a person in bed who has one foot in the grave.
Ideally, they open the door and the person says, How is your pain? Are you pooping? Okay, are you able to get around? Do you want me to talk to your daughter? You know, do you need more medicines? How's it going? And so ideally, people do spend months on hospice getting all of the benefits. And so I think he's modeling that, which I think is terrific. It's a it's a service.
Dr. Andrew Weil
Here's a question do you see a role for psychedelics therapy in hospice care?
Dr. Delia Chiaramonte
I absolutely do. And I'm fascinated by this topic it has been just personally striking me that maybe I need to learn how to do this. I'm very interested in this because there I have not done it myself, but I have spoken to patients who have done this and they have a completely different view of the universe.
And when people say they're afraid of dying, they tend to mean one, two, or three of these three things. One is what you said before Victoria, which is the process, will I have pain? Will you know what's going to happen? What's it going to look like? That's part of it. So the fear around that, I think psychedelics may lift some of that.
But the second thing that people worry about sometimes is the afterlife. And maybe because none of us know, maybe because they were taught something in childhood and then they straight away or maybe they have an idea of the afterlife, but they did some bad things and they think maybe it's not going to go so well for them. So there's this kind of looming fear of the afterlife, which no one, of course, can answer for them.
I think psychedelics have a huge potential benefit. There to give this feeling, which seems to happen for many people, that the universe is okay, like it's what's good, things are good and I have seen people say that they felt relieved about the fact that some heavy thing was going to happen after death. And then the third thing that sometimes people have fears about is will their families be okay?
Maybe it doesn't address that one as much. But I think the fear now and the fear of the afterlife, I think it's a really, really interesting new development and I hope we see more of it as that science evolves.
Dr. Victoria Maizes
Andy, what are your thoughts about psychedelics in end of life? I'm curious.
Dr. Andrew Weil
Well, you know, some of the earliest research that was done with LSD and psilocybin, this was in the late fifties and early sixties, was with terminal cancer patients and there were very good results. In terms of less need for opioids, Patients found it easier to be with their families. They were comfortable with the idea of approaching death, so the outcomes were extremely positive.
Dr. Victoria Maizes
So since hospice care in the home, do you first see hospice physicians prescribing LSD or psilocybin or MDMA? how do you see that unfolding as we move towards legalization, which does look like it's about to happen?
Dr. Andrew Weil
Well, the great need would be for guides who are trained in their use, and that would not be, you know, ordinary hospice people. They would have to be a special class of people who were trained in the appropriate use of psychedelics.
Dr. Victoria Maizes
They need those psychedelic experience and end of life experience presumably both. Yeah.
Dr. Delia Chiaramonte
I would imagine, though, that as these training programs become more prevalent, that they'll be significant end of life training as part of psychedelic training because it's.
Dr. Andrew Weil
About the head of palliative care at the University of Arizona. A woman I think she was in her sixties came to ask to have dinner with me a couple of years ago, and she said it just killed her, that she could not use psychedelics in those settings because she knew from personal experience how valuable they could be.
Dr. Delia Chiaramonte
So what do you think is the landscape for making them available in the clinical context?
Dr. Andrew Weil
Well, it's coming. I think, you know that MDMA is going to be made available soon for the treatment of PTSD, psilocybin, for treatment of drug resistant depression. So I think once that begins to happen, they'll be moved out of schedule one and become available for more uses.
Dr. Delia Chiaramonte
That's great. And both of those things, by the way, are really relevant in the palliative care context not just end of life, although certainly end of life, but in doing palliative care and a cancer center, which is where I was most recently, I was shocked by something. So either everybody in the universe has trauma, or trauma somehow contributes to cancer because almost all of my patients, when you just dug a little bit, had trauma and it informs how they cope and how anxious they are and what their nervous system does and if they can sleep or not, and if they have central sensitization making their pain worse.
So it's just so folded into the whole experience, as is depression. So since psychedelics can help with both of those things, I think even just from that perspective, forget even thinking about what happens after death. I think they're appropriate.
Dr. Andrew Weil
I inclined toward the former hypothesis that everyone has trauma.
Dr. Delia Chiaramonte
Yeah, that could be so.
Dr. Victoria Maizes
Andy, this is a little off the topic of hospice and palliative care, but if that's the case, doesn't it seem that it would be better to address that trauma before the end of life so that people could have a good life one way?
Dr. Andrew Weil
Sure one of our colleagues, Deborah Coryell, I remember her saying when she was teaching a workshop, I think on grief, and a woman in the workshop started going on about her family and how dysfunctional it was and giving all these example. And Deaver interrupted her and said, You're from a family. That's all you need to say.
Dr. Victoria Maizes
Yeah. Yeah. The family unit, which is both a source of probably great joy, but also at times great. Yes. Thank you for that word.
Dr. Delia Chiaramonte
There is one thing I wanted to share too, which I personally found really surprising. So I was a family doctor first way back when, just a regular family doctor. And then I did some hospice work on the side and I was shocked that in general, general, the hospice patients were happier than my family medicine patients. So the family medicine patients, many of them were coming.
I can't sleep. I have headaches, my jaw hurts, my chest hurt, my neck hurts. I must have something terrible. We would look for all the things that it didn't have anything terrible. They had life, right? It was hard. They were poor. It was hard. Yeah. And then the hospice patients who, if you believe what they taught us in medical school, you would think they would be miserable.
Right? Because we were sort of taught that you make people healthy and then they're better, they're happy, and then when they're sick, they're not happy. But when you're facing mortality, you sometimes live your life differently and you say, that guy's a jerk and I don't want to talk to him anymore. And I hate volunteering at that place. I'm not doing it anymore.
I love my garden and I'm going to spend more time there and I want to play with dogs because that fills me up. And people reshape their life to be all about the things they love. And it turns out when you do that, you get happier.
Dr. Victoria Maizes
And I have to say that, yes, we should all do that. I have to say in my integrative medicine practice, I've experienced that with patients who come in with cancer and I find that that saying don't sweat the small stuff, they stop sweating the small stuff and they, as you say, reprioritize and often they are quite a bit happier.
Dr. Delia Chiaramonte
Yeah. And that's why people sometimes say, oh, palliative care isn't that depressing? And I feel like, oh no, it is the happiest specialty in the world. It relieves you of 90% of your neuroses. Because when you see other people going through stuff and changing their life and being happier, you can't help but self-reflect and say, Hey, how about I make those changes before I get cancer?
And you don't care as much about the small stupid things because you see, you see what can happen at any minute. That could be any of our stories, but it isn't today, so oh my gosh, how grateful am I for that? And look how well it works. Even people who are on hospice can reshape their life and make themselves happy. So why don't I do that?
Dr. Victoria Maizes
Now does this relate to your positive doctoring work?
Dr. Delia Chiaramonte
Yes. Because in palliative care, but also in all doctoring, it is so much about the connection of the doctor and all the health care providers and the patient and family all together. And so thinking that we are inert and then we just go do things to patients is really not the way it works. We affect each other, even from the energy perspective, from the mirror neuron perspective.
But even just from a human perspective, we impact each other. And so when we're learning about these kinds of things, reshaping your life so that you are living in how you want, yes, we should tell our patients that. But who else should we tell us when we're practicing managing central sensitization, turning down our sympathetic nervous system tone, managing anxiety, we should learn it first for us so that we bring the right energy into the room and then we can teach it to patients so that they can help manage their own distress.
So it is so connected and combined, and the skills should come into our brain, in my opinion, in two tracks, one for us, one for the patient, so that we are sharing healing from a really integrated place and not just the frontal lobe place.
Dr. Victoria Maizes
Well, Delia thank you for sharing all of your wisdom about palliative care, hospice, how to integrate who we are with what we do. So thank you so very much for being on Body of Wonder.
Dr. Andrew Weil
Thank you. And Victoria, let me ask you a final question. Do we have adequate information in our fellowship curriculum about end of life care and hospice care?
Dr. Victoria Maizes
We definitely do cover it and we've had quite a few fellows over the year who are hospice physicians. I sometimes say that hospice is the best unknown secret place for people to practice integrative medicine because you actually have a lot of time.
And time is often the rate limiting step for integrative medicine. But in hospice, people have time to spend with patients.
Dr. Delia Chiaramonte
Absolutely.
Dr. Andrew Weil
Thank you, Delia.
Dr. Delia Chiaramonte
Thank you so much for having me. I really appreciate this conversation.
Hosts
Andrew Weil, MD and Victoria Maizes, MD
Guest
Delia Chiaramonte , MD
Dr. Chiaramonte ("Care-a-mon-tee") is an integrative palliative medicine physician and experienced medical educator. She is the Founder of the Integrative Palliative Institute, and host of The Integrative Palliative Podcast. She offers a ‘Positive Doctoring’ program for physicians and teaches families how to help a seriously ill loved one live their best life.
Dr. Chiaramonte’s past positions include Division Chief of Integrative Palliative Medicine at Greater Baltimore Medical Center, and Associate Director of the University of Maryland School of Medicine’s Center for Integrative Medicine.
She was voted by her peers as a Baltimore Top Doc from 2019-2022.
Dr. Chiaramonte is currently writing a book, tentatively titled ‘Calming The Chaos: The Essential Guide For Families Facing A Serious Medical Condition’
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