How Healing Works with Dr. Wayne Jonas

Palliative Care: A model of whole person care

• Dr. Wayne Jonas • Season 2 • Episode 15

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Summary
Dr. Ann Berger, a pioneer in the field of palliative care, discusses the importance of whole person care and the misconceptions surrounding palliative care. Palliative care is not just for end-of-life patients, but should be implemented from the time of diagnosis for anyone with a life-threatening illness. Dr. Berger emphasizes the need for personalized, integrative approaches to care that address physical, psychological, social, and spiritual symptoms. She also highlights the role of spirituality in healing and the development of the NIH HEALS measure to capture the spiritual component of care. Despite the proven benefits of palliative care, it is still not widely adopted, and Dr. Berger calls for better education and integration of whole person care in medical training.

Takeaways

  • Palliative care should be implemented from the time of diagnosis for anyone with a life-threatening illness, not just for end-of-life patients.
  • Whole person care is essential, addressing physical, psychological, social, and spiritual symptoms.
  • Personalized, integrative approaches to care, such as acupuncture, mindfulness, and pet therapy, can improve quality of life for patients.
  • Spirituality plays a crucial role in healing and should be integrated into healthcare practices.
  • There is a need for better education and integration of whole-person care in medical training.

Chapters

00:00 Introduction to Palliative Care
06:12 Integrative Approaches in Palliative Care
29:02 The NIH HEALS Measure
36:53 Challenges and Barriers to Implementing Palliative Care

Resources

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon"

Palliative Care: A model of whole person cancer care

Wayne Jonas (00:04.44)

Welcome to How Healing Works. I'm Dr. Wayne Jonas. My guest today is Dr. Ann Berger, who as an expert, and I should say, actually one of the founders in the field and of the field of palliative care and even more. Palliative care is not hospice. That's a confusion that often occurs. Rather, it's a medical specialty and an interdisciplinary team approach aimed at optimizing quality of life,

mitigating suffering among people with serious, complex, and often terminal illnesses. And Dr. Berger has in many ways not only founded it, but has created an approach to it that I think you'll find tremendous and unique and very whole person. After 24 years, Dr. Berger recently retired as the Chief of Pain and Palliative Care at the National Institutes of Health Clinical Center. That's the big building for those who are in Bethesda.

I had the great honor to visit her there when I ran the Office of Alternative Medicine and we were trying to get people to adopt a complementary and supportive and integrative approaches. And I went up and I found out she was already doing it right there in the middle of the NIH. She was one of the leaders in integrative care also. Her responsibilities at NIH included clinical care, teaching, research, and administrative activities. So the quadruple threat.

She's published extensively in the field of pain and palliative care and is the creator of the NIH HEAL measure, which we'll discuss. Really excited to have Dr. Berger as a guest today because palliative care is not well understood, properly implemented, and yet its approach is a whole person care approach. Each episode, I want my audience to learn a little bit about who my guest is, and I'm going to call her Ann. Ann, you call me Wayne. I think that's OK. We've known each other for a long time.

Wayne Jonas (02:01.936)

So I want to start off just by helping the listeners and the audience kind of understand how you got into this field and where you've got. You have, I think, one of the most unique sets of experiences and also training of anybody I know. Could you tell us a little bit of how you got here and are doing what you're doing?

Ann Berger (02:26.204)

So to me, somehow I always knew I wanted to be a doctor and I actually come from a family of business people, not doctors. And when I was young, my grandparents lived in, they were Holocaust survivors, but lived in Switzerland. And my grandfather actually had bladder cancer.

And typical to many people of that generation and culture, it was not discussed that he had bladder cancer. So not only wasn't he told, but my mother and her sister and my grandmother were the only ones who knew. And they didn't tell us, but I was a very intuitive kid and just knew. And my mother was going back and forth to Switzerland and...

Ann Berger (03:19.156)

And I just knew, I asked repeatedly, is he dying? And this continued for five years. That had a huge impact on my life, the lack of communication. And I think one of the first papers I wrote was on this conspiracy of silence many years ago, maybe even in nursing or in undergrad, I don't remember. But...

From there, I just knew that I wanted to do something taking care of patients. It was always going to be in oncology, because oncology to me was in my mind holistic care. It was care not only of patients, but it was care of families. And so I first started in nursing and then in, I got a master's in nursing both in pediatric oncology. And my first job was at Children's Hospital in Philly. And you see a holistic model or what should be a holistic model in terms of patient and family.

When I went to medical school a few years later, I had kids and I think I transitioned to adults, you know, because seeing kids was a little bit more difficult. Over the years, I ended up seeing at NIH, both adults and kids. But when I ultimately in residency and then fellowship,

saw that it really wasn't as holistic. I was like, I need to find this field that seemed to be developing in our country, but at really small spurts, and that's palliative care, that's more holistic. And so at the time I was a fellow, we're now going to me being a fellow in oncology at Yale.

Ann Berger (05:16.472)

And all the other fellows I was with, the four or five others had MD-PhDs and were going in the lab. And they said, well, what do you want to do for your second year? I said, I don't want to go into a lab. I mean, to me, that was like the worst of the worst looking at cells. I wanted to look at the whole person. I said, can I start a supportive care, palliative care clinic in the pain center?

Because pain is actually one of the symptoms that one could have that then you can wrap around, you know, you can wrap this whole approach around of comprehensive care. And in fact, I've written books on, for lay people on healing pain, also probably about 20 years ago, using an integrative palliative care approach. 

It's something that always drove me. I went and started that clinic within three months. I mean, the oncologist at Yale said, oh, are you leaving us? Are you leaving oncology? And I said, no, this is part of oncology. Within three months ahead, as a fellow, the head of anesthesia said, we need to keep her on as an attending. And so I then had a joint appointment as an attending in both anesthesia and oncology.

Ann Berger (06:43.032)

And the story goes on. I ultimately ended up, I went from there to UMDNJ in Jersey, and then I ended up at NIH running the clinic there, or the program.

Wayne Jonas (06:56.824)

That's fascinating. I think your statement about oncology is whole person care is so important. And it is whole person care and we can choose to be silent about the person if we want to, right? If we wanna just focus on the cell, but that is not good care. And in fact, as you know, and thank you for your comments on the new book that has just come out called, Healing and Cancer that I wrote with oncologist Alyssa McManamon, which is trying to, again, make this case. And palliative care is a key part of that. Supportive care and oncology, integrative care in oncology all come together to take care of the person in addition to the disease. Now, at some point in that journey, you actually went to nursing school, is that right?

Ann Berger (07:49.932)

Yes, I got an undergrad degree in nursing and then a master's in nursing, both in pediatric oncology at University of Penn. And I then worked at Children's Hospital in pediatric oncology way back. And, you know, I...

Ann Berger (08:11.972)

I think I went into medicine, well, I know I went into medicine because at the time, what has always driven me is the patient, even though I've been able to do research and education and administration, really what has always driven me is the patient. And so I went into medicine because I was very young at the time and they said, if you want to

continue up the ladder, I was a clinical nurse specialist, if you want to continue up the ladder in nursing, you will end up in administration. And I didn't want to do that. I didn't want to lose the patient. I mean, if you know me, I mean, everybody laughs, but if you know me, I like the story. I love people and I love stories. And so I can go into any store, supermarket, anywhere, and get somebody's story in five minutes.

And I'll do it without even realizing it just because I love people. And that's really, I think, part of going into what is whole person care and how do we do whole person care. You have to be curious about people. You have to love people. For me, doing this job has been a spiritual calling. I never had the love of the cell part of oncology, it was the people.

Wayne Jonas (09:37.624)

Yeah. Well, I'm glad that you mentioned the spiritual component. I want to come back to that because I know you worked on and developed a measure to try to capture that in terms of some of the healing. But before we get to that, people confuse palliative care. They think it's kind of like, oh, it's only for the end of life. It's basically hospice or something like that. But it's not. It's much, much more than that. I mean, for example, even in the recommendations of the ASCO, the American Society of Clinical Oncology, the main Oncology membership organization, their guidelines of palliative care say it should start within the first eight weeks of a diagnosis, right on, right at the beginning. So can you describe what is palliative care? What does it do? What goes on in palliative care? What are the different kinds of functions that you were engaged in?

Ann Berger (10:31.556)

So palliative care should be started at time of diagnosis of patients with cancer. Frankly, it should be started at the diagnosis of anyone with a life-threatening illness, which is most of the illnesses we have, whether it's cardiac, whether it's pulmonary, whether it's neuro, it doesn't really matter. It doesn't matter. People get a diagnosis that is life-threatening, and life-threatening doesn't need to be end of life now. It could be...

Wayne Jonas (10:50.188)

Yeah, lung disease, whatever. Yeah, exactly.

Ann Berger (11:01.188)

five years, 10 years, 20 years, it's life threatening and life altering. And so in palliative care, what we're looking at all the time is the physical symptoms, the psychological symptoms, the social symptoms, and the spiritual symptoms. It's what is important for a patient, what matters to a patient. The unit of care in palliative care is patient and family.

So we're looking beyond just the patient, but their environment. And hopefully sometimes there are some of us that believe it needs to be even more than that. So let's say you have a Ped’s [Pediatric] patient, it's patient family and their school environment. So it's really a model of taking care of the person

as they're going on their treatment journey for their cancer. But anyone with a new diagnosis of cancer, whatever the cancer is, even if it's going to be cured, it causes total upheaval in their lives and affects all of those physical, psychological, social, and spiritual dimensions.

Wayne Jonas (12:17.764)

Yeah. And the care that the medical side throws at folks with serious illness can be very disrupting, as you say, too, not only is the disease, but the care. And so sorting through what matters to the patients, the goals, the decision-making issues, they're not simple, are they? Is this part of the role of palliative care physician, palliative care team?

Ann Berger (12:41.845)

It's not simple at all. And in fact, I think some see it as palliative care. And unfortunately, I see this even in the palliative care world, palliative care sometimes is seen as, oh, we shouldn't see them until they're more end of life, which is then really just the hospice component. And all we need to be dealing with is advanced directives.

But advanced directives is something that changes over time. Your goals and how you, advanced directives needs to be think of as not what don't I want to do, but how do I want to live my life? So that changes over time. I mean, I myself had cancer at 40. I had breast cancer at 40, right?

Right after accepting the job at NIH, I was diagnosed like within a week of breast cancer and ultimately had bilateral mastectomies. And that's totally, it brings up all the issues of life and death. I ended up having back pain a few weeks later. I thought I had metastatic disease. I had two kids who were nine and 12.

You know, it brings up a lot of issues. And would I have wanted everything done at that time? Yes, at 40 years old, you want everything done. So your goals of care and then what you don't want done, which is really what I see what typical advanced directives are, changes over time. And it's dependent on.

on really what is going on at the time and what else is important in your life. So palliative care needs to be focusing on what are the important things for you in your life now? What are your goals? What are your hopes? What gives you meaning? What gives you purpose?


Wayne Jonas (14:53.088)

I love that, an advanced directive about what you do want in life. I think that's fantastic.

Ann Berger (14:58.048)

It's how do you want to live your life. And that's what in palliative care, when I would do teaching it's getting the story, finding out who this person is, because when medical professionals see people in the hospital, they're not seeing the person. So I always say, try to open up the windows of who this person is, of their home, of their work, of who they are as a people, as a person.

Wayne Jonas (15:31.832)

Yeah, yeah, this is a way of maintaining hope, even in the midst of very serious and what appear to be, if you only look at what you don't want, something that's otherwise hopelessness. I mean, if we did an advanced directive on, yes, let's prepare for the negative part and...

a dual arm at the same time about let's prepare for the things that will bring you joy, happiness that you do want to do, that would allow us to do those simultaneously and create hope even in the midst of serious illness and even terminal illness, wouldn't it? Let's work on that. Let's create an advanced directive for what matters for whatever period of time.

Ann Berger (16:20.612)

I actually that's something I wanted to do because I think it needs to be very different than the way we do it and the way we teach it now. Very different.

Wayne Jonas (16:28.868)

Yeah, we've got a task then. I'm gonna call you back after this and we'll talk about it. So give us some concrete examples. I mean, at NIH, you did amazing things. What was your day like at NIH as you went around and provided pain and palliative care for the variety of patients? Now realizing that most of these patients are enrolled in

clinical research studies, but what was a day like? What did you actually do day to day with patients? Give us some examples of some of the things.

Ann Berger (16:59.888)

So, I mean, in terms of day-to-day and how do you treat a patient, as Wayne was saying, people come to the NIH with hope that they're going to survive and they're going to at least have their illness or their cancer put into remission if not a cure. Unfortunately, most come with having gotten a lot of treatment before and are not going to be cured but could be put into a...

long-term remission because of the amazing, amazing science advances that have been done there. And so, like I say, you do see miracles, but people are also interested in having their personhood taken care of. And so we were integrated as being part of the journey. People who would come to see

Dr. Rosenberg's patients who would come for his trials would see us from the time that they were seen there. People would come for bone marrow transplants and we'd see them as a meet and greet before the transplant and then follow them through their transplant and either all the way to cure and or death. 

But it was following them from weeks to, from weeks to months to years. And so there were people that, I was there 24 years, there were people that I was seeing for at least 16, 17 years, easy, and just followed them along and got to know them and their families. And some were young people who ended up then getting married, having kids, you know, so it was really...

again seeing the whole picture.

Wayne Jonas (18:56.632)

Yeah. What kind of types of modalities did you offer and provide to patients? I mean, when somebody has pain, for example, the usual thing as well, let me prescribe you some morphine or some other kind of Toradol or some other kind of pain medicine, and then we'll get that on a schedule and that's the treatment. But what else? What would you do? What would you do as a palliative care? What were you doing besides that?

Ann Berger (19:22.06)

So from when I came 24 years ago, I said, wait a minute, we have all these complementary integrative modalities that really are part of the toolbox of palliative care. At the time, others in palliative care did not see that at all. It's now becoming more of a thing in oncology, but this is the toolbox of. If palliative care and the toolbox of oncology, it's how we treat symptoms.

And a lot of these modalities like acupuncture can treat the physical symptoms, but a lot of them actually are treating what I call the suffering. And the suffering are the social, psychological and spiritual symptoms. And the suffering of this whole picture of the total pain is many times more than the physical symptoms. 

Examples of what we would use would be mindfulness, hypnosis, biofeedback, Reiki, which is kind of like an energy medicine, pet therapy, massage therapy, art therapy. So it's going across a broad array of different modalities. Now in order to figure out which modality, we don't just throw modalities at people kind of like you don't just throw medication at people. It's not an algorithm. One needs to actually get to know the patient. So there are people that will respond better. An example I like to give that would respond better to something like biofeedback. Your

your engineer who comes in with an Excel spreadsheet and charts of their PSA score and how that PSA has risen is not the person that is going to say, gee, I think I'm going to like Reiki, which is energy work and touch.

Ann Berger (21:26.476)

But will they respond to something like biofeedback where they can look at a computer and see the changes in their body and how they can control it? That's the type of person that would respond to that. Whereas somebody like me, I didn't, and I've tried all the modalities and I'm trained to do some of them, did not like biofeedback and have claimed many times I was a biofeedback failure.


but things like reiki and acupuncture I love because I could actually feel the energy going through me. So it's getting the story and really getting to know the person and then you can choose integrative modalities that match with that person. Me, I'm a big pet lover. So bringing in the dogs, I mean, when I had my thoracotomy, I had the dogs,

Ann Berger (22:20.428)

the pet therapy from NIH come to Hopkins, had to get special permission from my surgeon, but I had them come because for me, that was extremely meaningful and extremely important.

Wayne Jonas (22:34.232)

Yes, yeah, that's fantastic. Some of these things, which a lot of them are just sort of common sense, this personalization, customization of the supportive types of environments here, especially because they're so low risk, most of them in these areas. And some of them are getting up to good levels of evidence. You know, our foundation and the Samueli Foundation helped fund...

five different guideline developments with ASCO and with SIO, the Society of Integrative Oncology. Two of them have now come out and there's some clear evidence that things like acupuncture for aromatase joint pain, possibly prevention of neuropathy from chemotherapy, but general post-operative pain work quite well

and very clear evidence that mind-body practices are beneficial in the anxiety and depression that often accompany these serious illnesses, especially in cancer. And so there's more to come. But these are guidelines. These reach top-level guideline levels in terms of the current evidence. And for those who think evidence should be used in making decisions, these should become part of standard care. I want to ask one aspect that I thought was...

You know, we use the words a lot, but I think you use the actual thing, if it is a thing, and that is the whole thing, spirituality. You've talked about spirituality, you developed a measure called the NIH HEALS to kind of capture that. Tell us, what is that? I mean, for many people in healthcare, it's very amorphous, and if they're very progressive, they might ask the patient if they'd like to see a chaplain, right? That might be the extent of it.

But you went way beyond that and said there are many spiritual care components that can be done, and you don't have to be a minister to administer them. Could you tell us a little bit about what you mean by that and why you see that as so important to whole person care?

Ann Berger (24:45.988)

So spirituality is really the whole basis of what we need to be taking care of, because that leads to disruptions and that lead to essentially suffering for the patient. And honestly, getting a diagnosis of cancer is automatically for every individual a spiritual crisis

because you're going to question meaning and purpose. What, you know, what gives my life meaning? What is my purpose? Those things are gonna be thrown in your face when you're dealing with a life-threatening illness that can lead to your death. Spirituality is a whole lot more than religion. Unfortunately, even the research in the field,

doesn't distinguish that enough. We always see in papers, in writings, even in research, it says religion/spirituality. But it needs to be separated. For some people, they get their meaning and their purpose and their connections to a God.

Ann Berger (26:05.681)

For other people, that's not where they get their spirituality from. And so it needs to be somewhat separated so that we understand again what gives this person's life meaning. And for some people, it's connections to nature, to music, to arts, to other people, to family.

Um, it's, it's a whole bunch of other things. So the NIH HEALS was developed because I was particularly interested being one that did not only a lot of palliative supportive oncology early on, but chronic pain, even during my fellowship at Yale, how come some people seem to heal and some, and peeling to me, meaning have

a positive life transforming effect from the disease, and some just can't function. So I would see these people with cancer who may even have end-stage illness and they had positive life transforming events. Then on the other side, I'd see somebody with a chronic fail back pain,

and they were disabled and couldn’t function. I for my breast cancer at 40 felt healed and used those words within six months of my diagnosis. And so I needed to understand what that was. So we started with qualitative work looking at HIV patients, cancer patients, cardiac patients, came up with a set of questions because I wanted to understand how this could then be tested in a quantitative way.

Ann Berger (28:02.888)

When we did further testing with the questions, did not understand at the time when I started that developing a tool would take between like 12 and 15 years, but you get the questions and then you go through a bunch of, you get, you, you have to do a factor analysis, you do cognitive interviewing after that. It's a whole process of how you get a tool, but ultimately we developed a tool of 35 questions that look at connecttion between 

Ann Berger (28:32.678)

God and or other people, family, self-reflection and introspection that has to do with things like compassion and mindfulness, and then trust and acceptance. And those are the three factors that make up the tool. We're in the process, it's been sent for publication of this tool going to nine items. And the tool has now not only been tested, but it's used nationally and internationally.

The world, interestingly, the research world that seems to have grabbed onto it the most are those that are using psychedelics or psilocybin. Again, because they speak about, people are talking about spiritual growth. People are talking about connections. And so we have published on

Wayne Jonas (29:14.798)

Interesting. Yeah.

Ann Berger (29:30.824)

how the NIH HEALS has stood up the test and has shown change in trial with cancer patients with psilocybin, but that whole international world, I mean, I've published now a lot on that and that world has grasped onto the tool itself.

Wayne Jonas (29:50.928)

That's fantastic. Thank you for that. It's a great description and I encourage our listeners who are interested in this to look up the NIH HEALS tool. We'll put it in our meeting [show] notes. As you know, I see a lot of veterans, a lot of military folks who was in the military myself for quite a while. And this idea of post-traumatic growth, the suffering, the growth that can come out of suffering if it's properly managed in a whole holistic way is there. And the spiritual aspect is key to that.

So I'm going to make sure I send it over there. I remember when Walter Reed, I was on the faculty at the Military Medical School and practiced over at the National Naval Medical Center that then became the Walter Reed Military Medical Center. And they were building a big center of intrepid for dealing with traumatic brain injury there and it's still there. And they wanted to be holistic. They wanted to, they realized you needed to be whole person care.

And I sent some of the people as they were looking at the design of this over to see your plays, to see what was going on there because it's right across the street. And I'll have to tell you that they adopted a lot of it. And that is a place where you can also go and witness true holistic care. I think a lot of it inspired by some of the, some of what you were doing at NIH.

Ann Berger (31:07.976)

So I was, I mean, I was actually involved, I think probably because you had said something, they brought me over with a bunch of other people and we, there was a physician there, Fred Foote, who I don't know if you know him. I worked with Fred for years. We developed outcome measures of what needed to be tested. So we were in the Nyco building early, early on, and then...

Ann Berger (31:34.276)

We're the ones who developed the healing garden, the healing walk at the Military Academy. And that was also something that we published on.

Wayne Jonas (31:45.752)

Yeah, no, that's right. And it's still there and it's still being used actively. I was over there a few days ago actually, in a few areas. So, we don't really have time to go into a lot of this, but I do, before asking you what you're doing now, I do want to mention a little bit of the research that has shown that a good palliative care done properly and properly timed and personalized.

Wayne Jonas (32:11.636)

It not only improves quality of life, but it actually has been shown to improve length of life in these areas. Is that correct?

Ann Berger (32:17.904)

Yes, that's absolutely correct. Those studies were first done in lung cancer, but has now been replicated in other studies. And it has shown improved length of life, which is, I think at the time and now I, again, time like has gone so quickly, but maybe it's 10 years, those studies were done.

That really helps springboard not only palliative care into oncology and become and make it more integrative, but it had oncologists looking up going, oh, well, I need to have my patients get earlier palliative care. 

Wayne Jonas (32:58.684)

So 10 years later, palliative care is still struggling, isn't it? I mean, the kind of care you've just described and you've done for the last 24 years and sort of the nation's, one of the premier nation's research centers, why isn't it more common? Why isn't it just standard of care everywhere you go in this country? It seems like it ought to be.

Ann Berger (33:30.396)

So I think there is still a block in both lay people as well as medical minds that it's somehow end of life care and that it's not something that should be adopted early. I think a lot of training programs are not like the training program I developed. And so the whole goal is to work on the physical symptom and to...

you know, to have advanced directives written for end-of-life care. So, in the community, much of what you see are palliative care doctors being called in the ICU, get my patient off the vent. You know, and that's what's happening. And I think it's between

education on oncologists and other doctors that they're not learning about this early palliative care and integration from day one. I also blame the palliative care community in saying that this is what we should be doing, but not actually doing it.

I mean, what I did to integrate immediately was I physically came into NIH and made rounds with all the teams. I made rounds with the bone marrow transplant team. I made rounds with Dr. Rosenberg's team. From week one, I wasn't even credentialed that first week. My nurses had to write the notes, my NP, because from week one, I was walking with the team and saying...

You know, we'd see a patient, they present a patient, and then I would say, well, have we thought about? And I would just be present. And they quickly said, gee, quality of life. We want our patients to get quality of life. I don't see that happening in most places. What I see is palliative care doctors coming in, handing out brochures. I've started a palliative care program.

Ann Berger (35:36.016)

And there's no working with, again, it's the working with people. It's the getting to know people. So much of what we do is not only care of the patient and family. I felt like much of the care was care of the healthcare providers to the point where I did co-lead the wellbeing program at the clinical center 

because first I did it informally and ultimately became, you know, became a legit thing because again, it was part of my job. So that having cookies and chocolate in my office and having them know that this was a safe place, we had a rocking chair, we had our tea cart which went out to patients but also went out to staff.

Those are things that we need to be doing. And I don't see other palliative care programs really integrating that and really doing that. I also don't see spirituality. Yes, spirituality is important and there is lip service for it, but it's not integrated into the doctor needs to be doing this also. It's not just call the chaplain.

Ann Berger (36:54.592)

And that's the issue, that's the problem. I also, as Wayne and I have talked, I think that if we actually instituted whole person care and taught it in medical schools from the beginning, kids go into this, young people go into this, wanting to take care of patients, wanting to know patients. And as they learn more and more and more about the cells and the diseases, they go further away from the patient and the family.

And so it has to be from day one that the core of all of this is the patient and family. And the story, you know, my fellows know if they would come to me and present a case and wouldn't tell me about the patient in terms of, you know, what they did for a living, what's important to them, do they have pets? What are their pet's names? Don't come and present the case. Go back and find all that out.

Wayne Jonas (37:48.464)

Fantastic. Well, I think what I've heard you say is that there's a barrier in the mind of both patients and the professionals about what this is about and the value of it. It's thought of as end of life care, and we need to somehow break that barrier down, which is why I like to call it whole person care. And in the book, Healing and Cancer, we call it whole person care and incorporate palliative care as a core part of that. 

In addition, we need tools to do that. And you and I have just talked about one, advanced care directive for living, and not just the end of life, but for living. So let's work on that and really dive deep down into that component because in many ways, that's what brings, you know, meaning and purpose back into life, which makes life worth living, you know, no matter how long it is in those areas. So.

Thank you very much. What are you doing now? You've just left the NIH. You must be lounging around and being a retired person, right? So what are you up to? I know you're up for a lot.

Ann Berger (38:53.732)

Yeah, there's no lounging. There's no lounging, but that's good. I wasn't, I didn't want to be lounging. I wanted to continue doing things, just had to step away from the hospital because of my medical issues. So going into the hospital was too hard. But I actually am consulting and I'm in a group

where my whole job in the group is the consulting group itself is looking at bigger systems in terms of things like pharma and other systems. I mean, it could be health care systems, but we have contracts right now for pharmaceutical places where we're looking at the systems and helping them become better

team players, both within their system, as well as with the community, with patients, families, and the community physicians, using modalities such as the whole area of mindfulness. And not mindfulness in the small term of MBSR (mindfulness-based stress reduction), but the whole vision of mindfulness being present, being aware

might, you know, a bigger mindfulness thing, a bigger look at happiness and how we bring happiness back to workplace areas. For me, my biggest thing of what I want to do is improve empathy, compassion, and human relations. And so if you go to the website of this

company that I'm with, that's my job there. I'm their scientific advisor, but I'm also, I'm looking at how do we improve in systems of any type, whether it's pharma, whether it's healthcare, or whether it's, you know, anything, hotel management, doesn't matter. How do we improve compassion, empathy, and human relations?

Ann Berger (41:08.544)

Because, you know, I mean, our country and our world is in great need of this right now. We're in an emergency situation.

Wayne Jonas (41:18.292)

Amen. That's right. Well, thank you so much. This has been tremendous talking to you, wide ranging. And I think we clarified hopefully what palliative care is and why it's important, why we need to do more of it and beyond. So great to be able to talk to you in this venue and all these years. And we'll definitely be in touch about how we can work together to continue the embedding in a routine way compassionate human relationships in healthcare.

Ann Berger (41:52.696)

Thank you. Great being here.