Joyful Palliative Care

Is Joyful Palliative Care possible? Palliative care clinicians are often kind and highly empathetic people, but uncontrolled caring can lead to compassion fatigue or even burnout.

Yet approaching the care of seriously ill people with an intentional approach can indeed make palliative care joyful.

Here are the steps:

1. More tools to relieve your patients' suffering (integrative symptom management)
2. Develop your healing presence
3. Know yourself
4. Become a heart-centered leader
5. Fill your cup

I'm offering a Joyful Palliative Care program for clinicians who take care of people with cancer, dementia, neurologic disease, and other serious illness. If this podcast episode sparks something in you, come join us.

Get on the Joyful Palliative Care waiting list so you'll be the first to know when the program starts. Also, people who join the program from the waiting list will get a discount or bonus.
https://trainings.integrativepalliative.com/pl/2148314858

Welcome to the tribe,
Delia Chiaramonte, MD
www.integrativepalliative.com

Coping Courageously: A Heart-Centered Guide for Navigating a Loved One’s Illness Without Losing Yourself is available here: www.copingcourageously.com 

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Transcript

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Welcome to the Integrative Palliative Podcast, where we help physicians and other clinicians master the art of integrative symptom management so they can wholeheartedly care for themselves as they expertly care for their patients. Welcome to the podcast. This is Dr. Caramanti. I am so glad you're here. And today we're going to talk about joyful palliative care. And I'm so excited about this topic. It just touches me. I just gave a talk at the University of Arizona Weiles Center for Integrative Medicine with this title, Joyful Palliative Care. And it touched me and it touched a lot of the people in the audience. And so it made me want to share this idea with you. And it inspired me to create a program, which I'll tell you a little bit about later on. But here's the concept. Joyful palliative care is not just for palliative care doctors or palliative care clinicians. It's really for anyone who is taking care of people with a serious illness or challenging aging. It's targeted really towards clinicians who are taking care of this patient population. But the truth is the tenets of joyful palliative care really do work just as well if you are a loved one and you're providing essentially palliative care either at home or in your loved one's home or in a facility. So I'm going to be speaking to clinicians, but if you're not a clinician and you still are experiencing taking care of someone who's ill or aging, this is for you too. Okay, so I have thought about this a lot. What is it? What is joyful palliative care? It is, of course, the care of people who are seriously ill, not necessarily people at the end of life, as I'm sure you've heard me say before, palliative care is not the same as end-of-life care. It includes end-of-life care, but it is not only end-of-life care. It is symptom-focused care for people with serious illness focused on reducing suffering. So reducing their physical suffering, reducing their emotional or spiritual existential suffering. That's the point. So if in your work life or your home life you are dealing with this, which is another person or multiple people who are facing serious illness, then this idea of joyful palliative care is for you. So is it an oxymoron? Can you have joyful palliative care? Isn't the care of people who are ill kind of sad or depressing? Yes, and no. No, it doesn't have to be depressing. Sure, it's sad because families are potentially thinking about losing somebody or at least having their function reduced or having them change who they are. But does it have to be dark and heavy and depressing? No, it does not. The thing that really intrigues me about it is that this idea of joyful palliative care is a mix of the patient and the carer. So the patient and the physician, the patient and the nurse, or chaplain, or social worker, or respiratory therapist, or physical therapist, or occupational therapist, psychotherapist, or family member. So a mix of the patient and the person giving the care. The energy really goes both ways. And so part of this idea of joyful palliative care, part of it is knowledge and tasks that you're sending towards the patient, but some of it is work that we do ourselves on us. And so I thought a lot about it. And there are five domains that I think are truly important when we're talking about joyful palliative care. I'm going to tell you what they are first, and then I'll go back and talk about each one on its own. So there are five. The first one is it is helpful to have more tools to relieve the person's suffering, physical, emotional suffering. So this really is the realm of integrative symptom management, which I also teach separately. But the idea here is what are the evidence-supported tools besides medications, because many of us know how to wield those already? What other tools are there that can help reduce people's pain, their sleep dysfunction, their nausea, their constipation, their vomiting, their fatigue, their depression, their anxiety? What else do we know that we can use to help reduce people's suffering? That's one. So more tools to relieve suffering. Number two is developing our own healing presence. So I've said it before, but I'm going to say it again because it's so important. We ourselves are instruments of healing. This is true whether you're a clinician or a caregiver, but as clinicians, we are instruments of healing. So when we come into the space where the patient is, who we are matters and impacts them. So we either can increase their suffering, which hopefully we don't do, but that does happen not infrequently in medical encounters, or we can increase their well-being and reduce their suffering. But that's work that we have to do for us to develop this skill of healing presence. So that's two, developing healing presence. Number three is knowing ourselves, because the truth is we're all human. And so we bring some of our own baggage into the interaction with the patient, and then our interaction with ourselves when we're maybe ruminating about how a visit with the patient went. So we may be kind of controlling, we may be someone who feels like we need to please everybody all the time and get positive feedback. We might be someone who's kind of a stickler and feels like we have to have it exactly the right way. So all of these personality traits that we bring to the encounter can make it harder on the patient and also harder on us. So knowing ourselves so that we can gain control of those parts of ourselves and look for the gifts in all of the challenging things that we see, that's an important part of practicing joyful palliative care. So that's three, know yourself. Number four is become a heart-centered leader. Because the fact is, in order to build this field, in order to work in a hospital or a hospice or a community organization, this is not something that we do in a vacuum. We need to be leaders of our team. We need to rise in leadership positions so that we can share with everybody else and change the culture of medicine. So I feel like having it just be us and the patient is wonderful, but is not enough. That really part of joyful palliative care is spreading joyful palliative care, which means we have to become heart-centered leaders so that we know how to interact with the leaders above us, we know how to lead a team, we know how to grow within an organization and help change culture. And the number five is filling our own cup. Because if our cup is empty, if we are depleted, our healing presence is crummy, we cannot be a heart-centered leader if we are feeling depleted. And so an important part of this whole story is that we actively fill up our own cup so that we can bring this healing presence to the organization, to the patient, to the family, and also to ourselves. So the five more tools to relieve suffering, developing healing presence, knowing yourself, becoming a heart-centered leader, and filling up your cup. So I want to talk just a little bit more about each of those. The first one, more tools to relieve suffering. So it's really important to know that this idea that some people have that, oh, complimentary medicine doesn't have a lot of evidence, maybe used to be true, but truly is not true anymore. There is a markedly increasing body of evidence supporting some complementary modalities for some conditions. So the first thing that I think is really important for us to realize is that saying something like, does acupuncture work, is a silly question because we don't say, do medicines work? What we want to know is does this medicine work for anything and if so, what? So the question really is, is there evidence for acupuncture, for example, in anything and if so, what? So we're not going to go from I don't ever tell anyone to do acupuncture to telling everyone to do acupuncture no matter what they're suffering with. We want to know what is the evidence for benefit for acupuncture, just as an example. So uh acupuncture has a lot of evidence for a lot of things. Probably the most compelling evidence is for pain, nausea, vomiting, sleep, anxiety, and depression. So if we learn the evidence base for other complementary modalities, we just have a bigger toolbox. And when we can help our patients feel better, we feel better. Part of what makes medicine hard is when patients come back and come back and come back with the same complaint and we can't fix it. That feels yucky. We don't like it, they don't like it, it can impair our doctor-patient relationship or our provider-patient relationship. And so having more tools to help people feel better literally makes the job more enjoyable. So we can use things like mind-body tools, which include meditation, guided imagery, qigong, tai chi, yoga. And there is evidence to support all of these modalities for things like pain, fatigue, anxiety, depression, health-related quality of life, et cetera. So there's a whole bunch of tools in the mind-body bucket. There's another bucket that is the myofascial bucket. There is a lot that we can do to reduce pain using myofascial approaches. So that can be osteopathic manipulative therapy. In some cases, chiropractic if they have a manual medicine approach. In some cases, for some things, massage. So the idea of addressing people's pain, if it's myofascial pain from an actual body work perspective, is so much more powerful than trying to just use meds, opiates to get rid of myofascial pain. It really doesn't work. I told a story in a previous episode about one of my patients who had terrible metastatic cancer pain, and he then he had this one extra pain, and we couldn't figure out what it was, and the MRI was fine. It turns out that was a myofascial pain, and all his huge amounts of opiates didn't fix that. But going to an osteopathic physician who did osteopathic manipulative therapy fixed it. So this whole world of myofascial pain and what it helps for, and who you should send your patients to and when, all of that is a really important knowledge base. So another bucket that we can consider is energy medicine. Some people called it, call it biofield therapy. This is maybe a little more outside the box. We don't exactly know what energy means, but we do know that there's some evidence, not a ton, but some evidence for biofield therapy in helping patients reduce pain and anxiety. And it is extraordinarily safe. Some people put acupuncture in the energy medicine bucket, some people put it more in the manual bucket. But there are many different complementary modalities that have evidence to support reduction in suffering, emotional and physical suffering. And it helps when we know this evidence so we know exactly how to put together a treatment plan and we know what to recommend to our patients. So all of that was number one. Part of joyful palliative care is having more tools to relieve suffering so your patients feel better and you feel better too, because it's more fun to practice when your patients get better. Number two, remember is developing our healing presence. There are multiple parts to this, as you might imagine, but three things that I think are important to think about are number one is really strong communication skills. So when we have a healing presence, we can allow people to be in silence. We can allow people their emotions without shutting them down. We can practice reflective listening as a tool to help people share where they are and make it clear to them that this is a safe space where they can share all their tough stuff. So if their family won't let them talk about their fears of mortality, we want to make it clear you can talk about anything here. And so when we develop our communication skills, we communicate that much more effectively to the patient. The other thing we need to do to develop our healing presence is to learn to ground ourselves. So if our mind is all over the place, we're going to transmit that energy to the patient, and we're not going to be able to help them be calm by entraining them to our nervous system. So learning how to sort of drop down into your relaxation response, how to stimulate your parasympathetic nervous system, whether that's with a tactile exercise or diaphragmatic breathing or breathing where the exhale is longer than the inhale or box breathing, whatever tools you are using to ground yourself before you go into the room with a patient is very important for developing healing presence because really what we're showing the patient is our calm energy so that they can mimic that calm energy themselves. If we're all scattered and cuckoo crazy, they're gonna feel that same way. And one of the tools that we can use for ourselves, which of course we also can teach to patients, is this be in the now tool. Because if we are in the past in our mind, like, oh, that meeting I just went to, that was terrible. I can't believe it. I said that thing, and then they made fun of me. So if the energy we're bringing into the room is that, that is not sharing our healing presence with the patient. And that is not gonna help them calm their nervous system down. If we're off in our mind in the future catastrophizing, oh my God, I have so many charts, I'm gonna get home late, I'm gonna miss the thing, and then I'm gonna be up at night doing charts. So if that's the energy that we bring into the room, we will not help the patient calm their own nervous system. So practicing this idea of noticing where our mind is, oh gosh, my mind's in the past or my mind's off in the future catastrophizing, and on purpose, bringing it to the now. So right now, I'm here with the patient. Right now, I'm washing my hands, right now, I'm looking out the window. Keeping our attention in the room helps us be grounded, helps us use our communication skills to show the patient we are here with you, our energy is calm, we are modeling for you how to be in a calm state. That's healing presence. And of course, an extra and important concept here is the intentional positive regard of the patient. So we're in the room, we're grounded, we're focusing on the now, we're allowing the patient silence, we're using reflective listening, and we are intentionally using positive regard towards the patient. So that's two. Number three, knowing yourself. We all have an internal judge that says mean things to us about how terrible we are and we mess stuff up and we should have done it differently, we're not good enough. We all have that. We also all have what Sherzad Shamin in his book Positive Intelligence calls saboteurs, meaning parts of our personality that tend to be unhelpful. So maybe we have a controlling saboteur, we have a stickler saboteur, we have a victim saboteur, maybe we have a hyperachiever. None of those are helpful to us, but they can change our relationship with the situation. So we might try to give good care to the patient and the patient doesn't seem happy. So we now may leave thinking, oh my gosh, I didn't please them, I didn't do a good job. We may generate all kinds of negativity for ourselves that is completely unnecessary. And all of that reduces our own well-being, reduces our joy. Knowing ourself also includes tapping into what the positive intelligence community calls just the sage perspective, meaning looking for the gift and opportunity in this experience. So the more we practice that, the better we get at it. And then it also helps us to notice where our nervous system is, and if we are stuck in the stress response, to use our tools to calm our nervous system and put ourselves into the parasympathetic nervous system activation so that we are in the relaxation response instead of the stress response. When we do that, we calm our amygdala, our prefrontal cortex is more able to come online and help us find the sage perspective in a difficult situation. So that's three. Know yourself, know your saboteurs, know how to access your sage, know how to calm your nervous system. Number four is becoming a heart-centered leader. So when we get this access to our sage, we want to lead from a place of sage, not from a place of controlling or a place of fear or a place of stickler where everything has to be exactly perfect. We want to lead from a place of, hey, team, this is a challenging situation. What does everybody need? What do we see are the challenges? What do we see could be gifts and opportunities from this situation? So we want to really access our own sage so we can lead from a place of sage. Part of becoming a heart-centered leader is learning to set loving boundaries. You have to set boundaries because otherwise, particularly as empathetic people, we just deplete ourselves. And when you deplete yourself, you get burned out, you get compassion fatigue, and it is hard to find your joy. So the irony here, right, is that we want to be super present, develop our healing presence, but also we want to set boundaries so that we don't deplete ourselves. And when we learn to set boundaries, we teach our team that it's okay for them to set boundaries. It's okay for them to set boundaries and still be a loving, caring person, a loving, caring clinician, a loving, caring caregiver. And then I think that part of being a heart-centered leader is learning to toot your own horn with love for yourself, because too often we feel like, oh, I'll just help everybody and I won't tell anybody about all the work that I'm doing. And, you know, I do it because it's the right thing to do. Okay, except the problem with that is that ends up giving us compassion fatigue, and it definitely ends up reducing our joy. So we need to learn that we're valuable, that look how we, how important we are, and we need to tell people that. We need to learn to tell our leaders that, our team that, if social media is part of what we do, we can share things up with the world in that way. So, in a not yucky, but honest and self-love-based way, we need to learn to tune our own horn as part of being a heart-centered leader. And then number five, we've talked about this before, we gotta fill our cup. We've got to look at what are the things that empty our cup and do less of that. We have to look at what are the things that fill our cup and do more of that. And we have to make sure that we're living a life matched to our values. So this is the way to practice joyful palliative care. And I think this is so important. I think this idea that you're either empathetic or tough, you know, you either care for people or you have boundaries is BS. There's no dichotomy like that. We can be all the things. We can be uber empathetic, we can have healing presence, and we can set badass boundaries and we can toot our own horn with love, we can actively fill up our own cup so that we feel good, so that we get joy, so that it's good for us, it's good for our families, it's good for the people who love us, and it's good for the people that we're taking care of. So I want to share this with you. I'm so happy to be able to share this in this podcast today. And if this speaks to you, if you feel like, yeah, that is how I want to be, that is how I want to practice, I want to learn those tools. I want to learn more about what is the evidence for different complementary modalities that can help my patients. I want to learn to develop my healing presence. I want to figure out what are my saboteurs anyway, and how can I be a heart-centered leader and how do I make sure that I don't get depleted? How do I do that? If that feels like it speaks to you, then I would love for you to join me in this program targeted to clinicians, but I'm I'm wide in my view of what that means. So certainly that means physicians, nurses, nurse practitioners, PAs, chaplains, social workers, therapists, respiratory therapists, occupational therapists, physical therapists, but also death doulas, hospice volunteers, so people who are caring for other people who are ill. So I have a bunch of people on the waiting list for this program already, which is so exciting for me. And I would love it if you would come join us too. So the best way to get hooked up so that you know what's coming when the program is ready is to go to my website, integrativepalliative.com, or if that's hard to spell, drdelia.com will get you to a similar place and click the get in touch button. If you click the get in touch button, you'll end up on my email list and I'm sharing all of this with my community. So if this speaks to you, come join us. It'll be the first time around, a five-week course on Zoom in the evening. I'd love to have you join us. And if you have somebody else in your life that you think this might be perfect for, please let them know. I'm so excited to be working with groups of people who see themselves in this heart-centered way. And I'm glad you're part of the tribe. So thanks for being here. Subscribe to the podcast so you don't miss anything. Go to the website, click the get in touch button so that you can hear about this joyful palliative care program when it's ready. I'm so, so, so glad that you're here. Have a wonderful week. I'll see you next Thursday. Bye-bye. This podcast is brought to you by the Integrative Palliative Institute. Visit our website, integrativepalliative.com. There you can access physician and clinician training, well being coaching, free downloads, and other cool stuff. And feel free to connect with me on LinkedIn and share your favorite episode with a friend.