Leading Palliative Care Expert Helps Overwhelmed Caregivers Better Communicate End-Of-Life Wishes

 

 

 

Leah (00:01.196)
Well, Dr. Chamberlain, thank you so much for coming on and sharing your expertise with us this afternoon. Of course, to start us off, do you mind telling us just a bit about your work now and kind of how you got there, your academic and career journey up until now?

Bruce Chamberlain (00:07.411)
My pleasure. Thank you for inviting me.

Bruce Chamberlain (00:19.482)
It's been a strange course. What I'm doing right now, I'm working with a privately owned company that provides a gamut of services directed at elderly and disabled. So my particular area is inpatient palliative care. So I'm working at a hospital down in Rock Hill, South Carolina, where we do, I work with two

excellent nurse practitioners, and we do inpatient palliative care consults. We also are affiliated with a second hospital that's a little bit north of Rockhill, where mostly it's me that goes out if they have palliative care consults. So I love what I'm doing. I've been doing it for almost six months now, and I'm working with great people. It's a very rewarding position. The company also does...

House calls, so they have nurse practitioners that go out and visit people who are, have challenges in getting to see a primary care doctor. And we have an outpatient palliative care service that is supposed to be able to go out and kind of address some of the palliative issues, the conversations about end of life care, more aggressive symptom management than many primary care folks are comfortable with doing. And of course, there's also an associated hospice and I work with them as well.

How I got here is a little convoluted. I went to medical school, Johns Hopkins Medical School in Baltimore. I did that on a military scholarship. So I was in the army and went to what was then an excellent place, Walter Reed in Washington, DC, and did my internship and residency in internal medicine. My dream was actually cardiology. I loved.

Leah (01:49.17)
Ha ha ha.

Bruce Chamberlain (02:13.038)
Doing cardiology, just the whole process, everything about it was excellent. And I had several very good mentors in that area. And so when I graduated, I was actually accepted into the cardiology program at Johns Hopkins. But the army decided that they actually wanted somebody doing primary care down in Georgia. And that derailed that whole course. Did my time in the military.

went out into private practice as an internist. In the course of that practice, I saw a lot of geriatric patients and I saw that one of the biggest issues with geriatric patients was chronic pain. That they were functionally and socially and emotionally limited by chronic pain. And chronic non-cancer pain is not very sexy. There's not a lot of money involved

Leah (03:11.756)
Great.

Bruce Chamberlain (03:11.778)
people didn't treat it. You know, it was like, here's your hypochotone, good luck, go on. And I just wasn't satisfied with that. So I did some self-education in non-invasive pain management. And then I connected with the physical therapist and also someone who did invasive pain management and sort of, I guess, unofficially started doing a lot of non-cancer pain management. And I saw some...

really remarkable success. There's some elderly folks who's only, you know, I had the lady that has always stood out in my mind was this elderly lady who just had very bad arthritis. And her dream was just to be able to go and walk around the grocery store, because that's how she socialized. But it hurt too much to do that. So she wasn't ambulatory anymore. And it was just devastating to her. And we got her.

I got her on some good medicine, got her over to physical therapy, and I'll back up a little bit. The first thing that happened with her is when I said, you know what, let's work on this. I think maybe we can get you better than you are right now. And she just broke into tears because to that point, nobody had ever talked about really helping. It was kind of like, let's put a band-aid on it. I'll give you some.

you know, why don't you take some Elvore Tab and good luck with that. And it was kind of tragic, but we got her back to shopping in the grocery store again, you know, just with better pain management, you know, some extended release products and some physical therapy to improve her strength. And that was really kind of something that said to me, all right, this is just a whole untapped area of distress, kind of a whole

disenfranchised population of elderly, debilitated people who have pain that can't get help. And it's not sexy, but it's important. So I found it really rewarding. And then one day I got a phone call from a local hospice agency. And up till then I really wasn't familiar with hospice. But they said, you know, we really like what you're doing. Pain management, would you mind helping us with hospice? And I said, why not? You know,

Bruce Chamberlain (05:35.246)
I had a half day off a week, so I thought, go down and try that. And darned if I didn't find in hospice what I got into medicine to do. You know, it was just every patient needed attention. And I'm not to demean certain things, but, you know, when you spend your day just cranking through patients who have a little rash, a little stomach ache, or got this headache or...

the patient that came in every two weeks with a diary of every bowel movement he'd ever had. I'm just like, okay, this is not as rewarding as I was hoping my practice would be. But I found hospice to be remarkably rewarding. Patients so grateful when I was doing home visits, they just astonished that a doctor would come to see them. And I have slowly increased my hospice time and decreased my clinic time.

And kind of push came to shove and there came a point when the clinic came and they said, hey, you're either with us or you're not with us. You need to make a choice. And at that time, the hospice I was working for, which was a national hospice, invited me to go full time with them. I ultimately became their chief medical officer and just fell in love with what I was doing. Time goes on, that company got bought, careers changed. I worked with a number of hospices.

We wanted to stay where we live, which was in northern Utah, which has over 90 hospices just in the northern area. So nobody can afford full time. And so during that part time when I worked as a hospitalist full time to pay the bills, but I really did not enjoy being in the hospitals because I couldn't not do essentially palliative care. You know, I couldn't not have the family meetings and talk about.

was working over my time. And I, hospice was my focus for many years. I was asked to do a job in Davenport where I was actually hired to be part of an inpatient hospice program. And literally on the way out, the chief medical officer of the hospital went to a conference and found out that every hospital worked their salt, had inpatient palliative care. So they...

Bruce Chamberlain (07:58.102)
changed my job description as I was traveling. Oh, by the way, we need you to set up a palliative care program in our hospital. And that was news. So again, I had a nurse practitioner who was very good that I worked with, and I helped train her, so she ultimately got board certified. And we had a really good program going. We went through COVID, and everyone knows how horrible that was. As a palliative care doctor,

Leah (08:09.992)
Ha ha.

Bruce Chamberlain (08:28.158)
essentially living in the ICU and all the gear. That was very challenging, but even more challenging because palliative care as an entity in a hospital, if you just look at the silo, it doesn't make money. You know, there are lots of studies that say it saves the hospital money, it increases patient satisfaction, it increases readmissions, but

Leah (08:45.763)
No.

Bruce Chamberlain (08:55.146)
doesn't make money and the financial crunch on that hospital, they ultimately discontinued the program. And so various things happened and now I'm here and this is a hospital that gets it. They contract with the company I work for to provide palliative care and things are going very well. That's how I got here. I love what I do.

Leah (09:18.048)
That is so great to hear and it certainly is important work. These are often a lot of patient populations that have been dismissed by the rest of medicine. Their pain has been invalidated and so it is so incredibly important, the work you are doing, seeing these people and helping them to live their life to the fullest. And that reminds me of a quote of yours that I actually came across that said, palliative care is not about giving up hope, it is about living your life to the fullest and that really resonated with me.

Bruce Chamberlain (09:28.16)
Mm-hmm.

Leah (09:47.064)
And something else that I've seen a lot about is that misconceptions about what hospice and palliative care is often prevent people from accessing these crucial services. And it's misconceptions on the general public side, but it's also misconceptions from healthcare professionals. Are there any misconceptions that you would like to specifically address?

Bruce Chamberlain (10:08.238)
Sure, the majority of people have never heard of palliative care. So, you know, when I go in and say, hi, I'm, I do palliative medicine. Um, they're like, what is that? If they have heard of it, they think it's hospice. And so I, my description is if you think of palliative care as a basket of fruit. And hospice is an apple. So hospice is palliative care, but it's the tip of the spear. And we do a lot of things that are.

stream from end of life care. I have an inpatient site, I've had surgeons call me to help with difficult to control pain management on someone who was nowhere near end of life. So I, are there weird noises happening?

Leah (10:53.168)
I'm gonna pause this for one second, we'll edit this out, but they're running a vacuum in the room right beside me right now. No, you're all good, we'll just, I mean, we'll cut this part out, but I'm gonna see if I can get them to turn it off, and if not, I might have to move and come right back, I am so sorry.

Bruce Chamberlain (10:55.795)
Okay.

Okay, I was thinking, what am I hearing?

Bruce Chamberlain (11:02.827)
Okay.

Bruce Chamberlain (11:06.495)
Okay, no problem.

Bruce Chamberlain (11:20.007)
BLEEP

Leah (12:13.012)
Okay, I'm back. And they said they're gonna be vacuuming for two minutes. So if you're fine to wait it out for two minutes, okay.

Bruce Chamberlain (12:20.766)
I'm fine. I do tend to go on. So if I am going too long and you want to say something, just wave a hand or do something to clue me.

Leah (12:29.94)
No, you are all good. I'm enjoying it so far. I love learning about this stuff. I think it's super interesting. And it's, I had intended to, I was pre-med in my time at Chapel Hill and I learned about palliative care later on in my educational journey. And it was just something that I found incredibly interesting, but it was not one of the traditional ones I had heard. I'm gonna turn my mic off maybe so you don't have to hear the vacuum for a second.

Bruce Chamberlain (12:41.43)
Mm-hmm.

Bruce Chamberlain (12:55.446)
No problem.

Leah (14:27.484)
Okay, we might be good.

Leah (14:32.476)
Okay, do you want to just start your answer over to that question? I'm not sure where we got cut off.

Bruce Chamberlain (14:38.79)
I'm not sure either. I'm trying to remember what the question was now.

Leah (14:41.572)
It was about misconceptions about hospice and palliative care. We can jump right back in.

Bruce Chamberlain (14:44.246)
Misconceptions. Yes.

Bruce Chamberlain (14:49.634)
Okay, so start all over again with the answer or that's fine. That's fine. So it's a very common thing that people have never even heard of palliative care and if they have, they tend to think of it as hospice. And what I do is I describe it palliative care as being like a basket of fruit and hospice is an apple in the basket. So it is a part of palliative care. It's like, as you might say, the tip of the spear.

Leah (14:52.818)
Yeah, if you want

Bruce Chamberlain (15:18.338)
But palliative care moves quite a bit upstream. You don't have to be approaching end of life to receive palliative care. I've been consulted to just do aggressive pain management with post-op patients who were nowhere near end of life. When I go in to see a patient in the hospital, I tell them that palliative care has three primary goals. The first is we are trained in aggressive symptom management that we are the most holistic of medical specialties because I'm not looking at heart or lungs.

or feet, I'm looking at that person and how can we improve their quality of life and be more aggressive about managing their symptoms. So that's the first thing. The second thing is because we have a little more time than a hospitalist and a little more expertise, we help them to have some of the difficult conversations that people don't like to have, they tend to put off or never have, but that it's important that we do have those conversations.

And so that's one of the main things I do. And the third thing I explain is that we provide communication. Nine times out of 10, when I go into a patient's room and I ask the patient or family, what is your understanding of what's going on? The answer is, we don't know. Or it's very optimistic or doesn't include everything.

Leah (16:43.744)
and this.

Bruce Chamberlain (16:45.194)
And there are a lot of reasons for that. Many of these patients are elderly. They're often hard of hearing. They're sleep deprived in the hospital. They're sick. People are constantly coming in and out. And an awful lot of the hospitalists

Practitioners at this point are foreign physicians who often have a tough accent. And again, nothing prejudicial about that, except that if you're an elderly patient who is hard of hearing and the doctor comes in with a heavy accent, regardless of what it is, they have trouble hearing that and understanding what is being said.

So I say the part of our job is crowded care. We don't switch, you know, our hospitals change every Tuesday. So new doctors, new nurses, everybody's always rotating new people. And I say, I will be a constant face for you. I won't change. And I will speak in your language, your terms, English that you can understand and answer every question. I don't want you to leave not feeling in any way like you haven't had your questions answered and that you don't understand what's going on.

And people are just remarkably grateful for that. I mean, that for them is more important than all the rest of this stuff because hospitals are scary places. Whether you're elderly or not elderly, if you're not familiar with the system, it's scary to be in a hospital. It's scary to be sick and it's very disorienting. So we try to ease them through that process. And that seems to help. They get what we do. It's not just, hey, we're here because you're gonna die.

I preface my end of life, my goals of care conversation with, I have this conversation with everybody. I'm not predicting that you're about to die and we don't think you're about to die, but we do know that when you're 83 and have multiple medical problems and you're in the hospital, things can happen abruptly. And we'd rather talk about it ahead of time and have it not happen than be surprised, you know. And...

Leah (18:55.068)
Yeah. And that's

Bruce Chamberlain (18:56.059)
So that's kind of where palliative care is.

Leah (18:58.904)
Yeah, and that what you just said reminds me, I just came across this quote that said, it's important that we destroy the myth that telling the truth destroys hope. And I feel like that's incredibly applicable. Have there been any particular patient encounters or moments in your career that have been just deeply impactful to you personally or professionally?

Bruce Chamberlain (19:20.654)
Oh, it's all the time. All the, I will say, so palliative medicine is not for everybody. I mean, there's a lot of emotion here. I had a patient die today. Shortly, you know, I talked with the family. They had just moved here to be close to another family member. He suddenly decompensated.

Leah (19:22.24)
Too many to count, I'm sure.

Bruce Chamberlain (19:46.27)
I went in, I talked with him, I was able to say, look, he's close, he's within minutes to hours. And he passed. And I had really kind of bonded with the family a little bit and it was hard. It was just very hard. You have to, there's a fine line of sufficient empathy, which is what's often missing in physician, patient, family interactions that doctors are not, many doctors.

are not very skilled interpersonally. They can come across as quite abrupt, they can be short. I always go into the room and sit down so they know I've got time. And what I do for me, I actually view it more as a ministry than a medical profession because I'm addressing spiritual things, emotional things, as well as physical things.

I saw a patient yesterday, elderly lady came in with a fractured hip and this, actually no I'm sorry, she came in with, she had fallen and had a subdural hematoma and the scans showed almost certainly she had metastatic lesions all through her spine. And when she fell she hurt her knees. And she had some memory deficit but wasn't what she called dementia, you know. And when I said, what's going on with you?

She said, oh, you know, I bumped my head. They told me I've got some blood in there, but it's okay. And my knees really hurt. And I said, have they told you anything about your scans? No, what? So I had the privilege of easing her into the fact that she probably had cancer and no one had brought that up with her before. And that is a remarkably emotional moment for someone to hear.

they almost certainly have a terminal illness. That's always it.

Bruce Chamberlain (21:51.938)
And I go clear back to when I was a second year medical student, in our last quarter, we actually started our rotations and I did surgery. And on rounds one day, the attending physician said, yeah, biopsy came back, this guy's got cancer, it's inoperable. And he told me, the medical student at the end of the second year, he said, go in and tell it.

And I just thought, and I did that as best I could, but that has never left me that, how dare you take such an important conversation and just delegate it to someone who has no experience, no understanding, no training. We have the opportunity to be with patients in very sacred times in their lives. Dying is a very sacred moment.

Leah (22:47.168)
Yeah.

Bruce Chamberlain (22:49.858)
And it is very, I don't want, special is probably not the right word, but for families who are there, it is something unique and emotional and often very spiritual. And that we are privileged to be a part of that is, it's a gift, but it's not a gift that everybody can take in. So really, almost daily, I have experiences

Leah (22:49.981)
Yeah.

Leah (23:02.368)
Mm-hmm.

Leah (23:15.008)
Yeah.

Bruce Chamberlain (23:19.37)
I will tell you the funniest thing that ever happened to me. While I was working with hospice, we had a patient who was in his 60s, generally healthy, who for no apparent reason just basically went into a coma. And they could never figure out why or what happened to him. And this will kind of date me as to when this was, but so he was at home, pillar of the community, a very religious man, huge family.

Leah (23:22.216)
Mm-hmm

Bruce Chamberlain (23:49.442)
And I happened to be there when he started showing signs that he was rapidly approaching death. And he started oftentimes before death, and usually it's not right before death, but we call it the golden hour, kind of like that burst of energy you get before you deliver in pregnancy. People sometimes perk up and do things and that's hard on families because they think, oh, it's getting better. Well, he started...

moving a little bit, which he hadn't been doing. And I said, hey guys, come on over. This may be our chance to, you know, you may be a chance to spend a little time to say something. He sat up, hadn't done that for weeks and weeks. He looked around and he said, damn you Bill Clinton, and died. And the family was just, he'd never been very political, never been someone who would curse.

Leah (24:45.637)
Yeah.

Bruce Chamberlain (24:46.67)
That was his last words for his family. They did not put that on the gravestone, I don't believe. But you just never know what's gonna happen. You just never know what you're going to encounter as you go through this. We interact with families at some of the most stressful times of life and things happen. It's funny, it's sometimes tragic, it's most frequently emotional, but the reward with seeing somebody

Leah (24:52.931)
Oh my goodness.

Leah (24:58.964)
Yeah.

Leah (25:03.678)
Absolutely.

Leah (25:13.301)
Yeah.

Bruce Chamberlain (25:16.618)
get out of pain. I actually had a neighbor who was on getting treatment for cancer that was metastatic. And she came on to the hospital I was working with. And she had been a real go getter and was just exhausted and constantly in pain. And I addressed her pain with extended release. I put her on a little bit of a sim a stimulant. And the next week, literally the next week,

she was a new person. And she said, why didn't anybody do this for me before? If it could be done so quickly and so easily, why has nobody done this for me? Well, I mean, that's an indictment of the system, but it's also very personally rewarding for me to know that I was able to make that much difference in a patient's life and improve the time that she had left. So it's all rewarding.

Leah (25:56.436)
Yeah.

Leah (26:11.492)
Yeah, absolutely. Yeah, I mean, your job is certainly one that requires a lot of emotional labor, in addition to all of the other support you provide. So to wrap us out, do you have any pieces of advice for students who are entering the health professional space now and who might begin careers in hospice or palliative care or across any medical specialty? But what advice do you have on how to best interact with patients, how to deal with the emotional labor that comes with health professions?

Bruce Chamberlain (26:41.942)
I think the key is don't go in like you're the expert. Don't judge. Again, you often hear people say, oh, his husband is a jerk, what does he know? We don't know. Again, people in crisis aren't the people that they are not in crisis. So we don't judge. Have empathy for what's going on, listen. And most of all, if you don't know what's happening, ask for help.

There's just a lot there are a lot of doctors out there and I because I've seen their patients who think they're hot stuff when It comes to pain management and they're not Ask for some help And again, I that's my area but in any other don't pretend to be a cardiologist If you're not send them to somebody who is an expert your patients deserve the very best they can get and it's not Anything negative about you? Nobody can know everything be willing to

ask for help and know what you don't know. So we all have, I learned things constantly and I've been doing this for over 20 years. So you just always have to be humble enough to be teachers.

Leah (27:51.388)
Yeah. Well, thank you so much, Dr. Chamberlain, for coming on and sharing your story and expertise with us. I really appreciate it.

Bruce Chamberlain (27:59.644)
My pleasure. Thank you for inviting me.