What Is Palliative Care and When Do You Use It?

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: As always, thank you for listening. This podcast is the audio from a special virtual community meetup featuring Dr. Joe Straton, who is board certified in family medicine as well as hospice and palliative medicine. Dr. Straton helped community director Melissa Jenkins lead this meetup on palliative care. We hope this podcast answers some of the questions about what palliative care is and the various times it might be given.

Dr. Joe Straton: Hi, everybody. I'm Dr. Joe Straton. I go by Joe. Please call me Joe, if you'd like. I'm a family physician and also a hospice and palliative medicine physician. I live in the Philadelphia area. I've been working here for years. I did my training in the city, in Philadelphia at Thomas Jefferson University. That was both med school and residency, and then I moved over to University of Pennsylvania in the city, and I got deeply involved in palliative care and hospice work there.

Now I'm involved with a group of nurse practitioners, nurses, social workers, and others, who, we visit people at home who have difficulty getting out to see their doctors and provide primary care and also, you know, other supportive care in the home, and I'm just so honored and thrilled to be here with you. Palliative care is just a real passion of mine, and one of the things that I'd really love to start out talking about is what is palliative care. Even among everyone, it's really misunderstood.

Every group I talk to, doctors, nurses, I find it's just not well understood, so much so, that I often don't use the word palliative care, because it's so misunderstood. I think of it as more as, you know, kind of supportive care. We started a program at my work. It kind of provides palliative care, but instead of calling it palliative care, we call it advanced illness management, because it's really working with people who have an advanced illness.

And I feel like it's just more descriptive, and to take a step back, when I think about palliative care, I think it's really everything that we should be doing to address distress. I used to describe it as things that we do to improve quality of life. And then I realized, I said...you know, if I asked somebody or somebody asked me, hey, Joe, how do I improve your quality of life? I struggle to answer that question. I'm not quite sure. But I learned that if we reduce the stress, quality of life goes up, and so, I really focus more on what's distressing for people.

When I think about what's distressing for me, for others, it's really a handful of things that are distressing, a handful of categories that's, you know, kind of physical symptoms, physical issues, pain, nausea, shortness of breath. Those things are distressing, and then what else is distressing? Emotional issues. Sadness, depression, anxiety, worry, those things are distressing. And so, when I think about palliative care, it's everything we do to try to address distress, but we've only scratched the surface of distress.

What else is distressing? Being a burden on our families. Our caregivers, our loved ones, you know, we worry about them, and I think we worry about, you know, to what extent am I putting out my caregivers? That's really distressing for us.

Finances are distressing. Being sick is financially expensive, and so, you know, money is distressing. Two other really important things that are distressing are spirituality. I think when we have an illness, you know, we think about spirituality in a different way than we might have previously thought about it, and then another kind of what I call domains of distress, I think of it as existential.

I don't mean it in a fancy, philosophic way. I mean it in terms of, like, who am I? You know, I think about...my kids are 26 and 24 now. When they were 6 and 4, they required a lot of driving around and going places, and there was a time where I injured my leg and I couldn't drive them, and I felt like, who am I? You know, suddenly, I'm not the same parent in terms of my ability to provide, and all that happened was I wasn't able to drive. And you know, I think for all of us, as our bodies change, we're not as able to do things as we used to be able to do. It creates this sense of distress of, you know, gosh, who am I now in relation to all the things I want to do?

Again, when I think about, you know, what we do and lumping it under palliative care, it's really addressing all of those domains, is the way that I think about physical symptoms, emotional concerns, caregiving issues, spirituality, financial, and kind of the, you know, who am I, and what's ahead? So, all of those are the things that, when I think about what should a really good palliative care team do, it's really all of those things.

Also, I think about palliative care as, really, a team, because, as a physician, I know how to help with some of those things, and there are some of those things that I'm not the expert to help with, and that's why, you know, having nurses, social workers, behavioral health specialists, chaplains, and others on the palliative care team is just so vital. So, that's how I think of palliative care, or as I like to call it, advanced illness management.

And something that's really important is that palliative care and hospice, there's an overlap in the goals, but they're really different from each other. They're really different. I'll start by talking about hospice.

I'm involved in hospice as well as palliative care, and hospice I think of as an insurance-defined program. It's an insurance-defined program that provides a lot of services that we're not otherwise able to get, and you know, hospice will provide medications that are fully covered, everything that's needed within hospice. There's no charge for medications. We get a lot of services of doctors, nurse practitioners, nurses, home health aides, social workers visiting us in our homes and providing a lot of care that's above and beyond what we could get through regular home care.

Hospice provides a lot of services that...we really can't get that extent of services otherwise in our healthcare, and it's defined by insurance. And one of the defining factors is that somebody's life expectancy is six months or less if the illness runs its natural course. So, when I think about hospice, it's this huge amount of services for a specific group of people, those people who are likely to die in the next six months, and that's hospice.

Palliative care, there's no life expectancy issue. For palliative care, it's really anybody who can benefit from assistance with all the stuff and distress that I described, physical, emotional, caregiving, and others. That's who palliative care can benefit from, and one of the things I think about in my palliative care hat is there are a lot of people I work with in palliative care who are not dying. I've worked with people who are receiving curative care for their leukemia. They're getting a stem cell transplant, and I'm involved in their care to help with the pain and the nausea.

They're going to live decades more, and they still can benefit from palliative care expertise, and so, you know, one of the main differences that I think about for palliative care and hospice is...you know, again, to repeat, and I apologize. That hospice is defined by insurance as a whole set of services for people who are likely to die in the upcoming six months. Whereas palliative care is for everybody else, and so, I've been talking a lot. I'm going to pause there for a moment. Melissa, what did I leave out? What can I expound on?

Melissa Jenkins: You did great. I'm actually going to give it...Mary Jane, I know you are somebody who submitted a question. Would you mind just asking your question, if it's still relevant for you?

Mary Jane: Well, my question was, what is the appropriate time to request a referral to palliative care? Now, I have stage IV cancer, but I'm doing really well, and I only see the oncologist every three months. So, doing really, really well. So, for somebody who's doing well, what's an appropriate time?

Dr. Joe Straton: Wonderful question. I think a time to request a referral to palliative care is anytime it may be helpful, and that's a really open-ended answer, and I understand that. There are times that it might be helpful to request a referral to palliative care to meet with one of the specialists to find out, what do you do? What do you offer? I just wanted to get to know you, so when I need those services, we have this relationship already. That, in and of itself, would be an appropriate time for a referral to ask to meet with the palliative care specialists to find out, you know, who are you? What do you do, and you know, really good to know you. I might need you in the future. I just want to develop that relationship. That would be one good time.

Other times that it would be helpful are for symptoms such as pain, nausea, constipation, worry, difficulty breathing. Any of those symptoms that it feels like are just not yet well managed or are limiting in ways that it would be helpful to talk with somebody about, that's another great time to ask for a referral for the palliative care team.

Others are...and again, when I think of a palliative care team, the team is best served if there are social workers and maybe behavioral health specialists, and often, there are spiritual counselors or chaplains who are parts of the team.

If there are needs like that that I have, that would also be an appropriate time to ask to meet with the palliative care team. Many of us are taken care of in cancer centers that have social workers and others. So, for caregiving issues and I need more support in the home, maybe there's a social worker who's part of the cancer center, and if that's not the case, ask him to meet with a palliative care specialist. A specialty team would be really helpful. Mary Jane, let me reflect back to you. Did I answer your question, or did I just talk a lot and not answer it?

Mary Jane: No, you gave insight. You know, it's a tricky situation, and this'll sound funny, but because I'm doing so well, I don't want to abuse the medical system ahead of time.

Dr. Joe Straton: I hear that loud and clear, and really thoughtful and very, very generous. And in my experience, no one in palliative care would say, oh, you're doing too well. This is not a good use of our time. I think they'd really, you know, be honored to meet with people at all different stages of an illness.

Melissa Jenkins: Is palliative care covered under insurance?

Dr. Joe Straton: Yes. Thanks for asking that question. So, when I think of hospice, as an example...and I bring it up because there's so much confusion between what's hospice and what's palliative care. When I think of hospice, hospice is a change in our medical benefit, especially for those of us who have Medicare. It's billed very differently than the rest of our medical care, in a way. We need to sign forms, and our hospice comes off of a different part of our insurance benefit, especially for those of us who have Medicare.

Palliative care, on the other hand, is paid for the same way as a visit to a lung specialist, a cancer specialist, heart doctors. It's paid for in the same way as we would pay any other physician that we're seeing. So, if someone is referred to me for palliative care, I would bill for that visit the same way I would as a primary care doctor, the same way I would as if I was a heart doctor. Fully paid for by insurance in that way.

Melissa Jenkins: Perhaps you can share a little bit about more the non-medical aspects, I guess the non-pain management or the non-symptom management parts of palliative care. How is that different...like you said, I heard you mention a chaplain or support services. Are they paid for, as well? Or is that part of your treatment team? What is that like?

Dr. Joe Straton: There's no national standard, from an insurance perspective, of what a palliative care team should be and who should be on it. And palliative care teams are brought together and funded in different ways. A couple of teams that I've been on through my life have had foundation funding or other funds that help pay for services.

So, you know, as an example, a social worker is usually not billed for, even though a social worker, as I would say, are among the most helpful members of a palliative care team, but usually, those are just funded in different ways by the organization itself. And one of the things that I think about, for myself, I've learned, and when I'm teaching others, when I'm meeting somebody, I'll introduce myself, and I'll say, how can I be helpful? My go-to phrase. Too often, we physicians...you all know. You see a lot of us. We'll ask specifically about things, and they're typically things that we have expertise in, but I've learned to ask, how can I be helpful, because sometimes people will say, you know, I'm feeling okay. I'm just really worried about my daughter who is trying to manage her kids, manage her work, and help me. And I'm really stressed about that, and then, you know, that helps me think, oh, okay, there are some really important issues here related to caregiving, and let's talk about that, and there are ways that I can be helpful with that.

Then there are ways that I'll reach out to, you know, the social worker who's on my team and say, Mrs. Smith, to make up a name, is having issues with caregiving. What advice do you...social worker, what advice do you have for me, Joe Straton? Would you have the ability to reach out to Mrs. Smith and think through what kind of other resources are out there that could be helpful? And so, I encourage each of you to feel welcome to bring up those issues with any member of your cancer treatment team as well as palliative care, because that's what we all should be thinking about. And sometimes we forget to think about that.

And so, within many cancer centers and within palliative care teams, it's typically a multidisciplinary approach of physician, nurse practitioner, nurse, social worker, behavioral especially, maybe psychiatry, maybe chaplain. The only services that insurance typically bills for are the physician/nurse practitioner services, but all those other services likely are available and there to help with, you know, all of these issues that are affecting us.

You know, finances is an important aspect, as well. Many of my patients being present with family members, it's very, very expensive to have an illness like we're talking about. There are a lot of trips back and forth to the doctor. There are a lot of co-pays. The medicines are expensive. Social worker can be very helpful with that. Pharmacists can be very helpful with that in terms of, you know, are there other benefits that I should be thinking about or other ways to pay the co-pays for these medicines, and what kind of transportation may be available, both to...You know, if I'm not able to drive more, to help offload my kids, who are driving me. All right, you know, what other transportation services might be available? All of these things are what a good multidisciplinary team is really trained to think about and has a great amount of experience and expertise in assisting in those ways.

Melissa Jenkins: People often think that, you know, in addition to...connecting it, too often, with hospice care, palliative care, it's thought of as pain management, and I like how you're talking more about sort of much more globally, and keep that in mind as you answer.

Tanya, do you want to ask your question, or should I just read it? I'll read it, if you don't jump on. Does palliative care occur in a hospice facility or their own facility in the patient's home? So, again, it's like, how does one separate it out, and what part is being done that's more symptom management, like pain? There's Tanya.

Tanya: I wanted to know if it was a place, like, that you go? Like, hospice care could be in your home, or you go to the hospice facility. Is palliative care similar to that, or is it just a service?

Dr. Joe Straton: Beautiful question, and it varies widely from region to region to region. It really varies widely, and I think of palliative care as being offered in the hospital, as a consultation service in the hospital, in the outpatient setting, as an outpatient visit, in the home where it's available. It's not available everywhere, unfortunately, but in the home or the doctor, nurse practitioner, nurse, social worker, chaplain, others to visit people in the home.

And then in kind of an inpatient setting, there are some hospitals that have a palliative care unit, a unit that's kind of designated for people who would benefit from the services that we described that palliative care provides and do not need, or are not enrolled with, hospice care. So, there are, you know, in the hospitals, some inpatient settings like that, but typically, in my experience, those hospital-like settings or inpatient settings are for people who require being in a hospital for some reason.

There are few, if any, kind of residential palliative care places where...if I were at home, for example, if I were at home and I needed more acute palliative care, I needed better symptom management or I was having difficulty living in a home anymore, or at this time, I just didn't have the caregivers I needed, there are not enough...there are few, if any, kind of palliative care places where I could transition to receive that level of care.

Tanya, please let me know if there's more follow-up that can be provided there.

Tanya: No, I understand what you're saying, but I just wasn't really fully grasping it, like, as if it's a place. So, if you were planning...you know, I think that Mary Jane had said that she feels great now. I feel great now, but we would like to know what our options are in the future when maybe we don't feel great. Would it be going to a place, or I think you told her that now would be a good time to go just to see what is available in the area.

And I think that's what you're touching on with my question, because we all come from different parts of the United States. So, maybe in my area, they might have a facility like you said, but I've never explored it or explored what was available, what I did see and what was, I guess, mainly offered was hospice, but then you said that that would be only when you get to the point where you have six months to live. So, someone like Mary Jane or myself, that isn't our diagnosis at this time.

Dr. Joe Straton: Right, and thank you, and because palliative care really differs geography to geography, I think it could be a really good idea to consider a referral to meet with the palliative care team, or even speak with them by phone to learn what kind of options are available nearby. I would absolutely encourage that.

Melissa Jenkins: I know in some of our meetups and I know most of you here, there's been times...and I remember specifically somebody...it was Janine who came in and said, the doctor asked me if I wanted to consider palliative care. I'm not ready to die. You know, I'm just curious, and we said, no, no, no, you know, you're having a lot of things going on.

Is it customary that the doctor will then say you seem to be having a lot of symptoms that I'd rather see you go to a palliative care, or is that really the responsibility, also, of the medical oncologist? Who is responsible for that? And her instance was really a lot of pain was going on, a lot of discomfort, physical discomfort. At what point do you ask the oncologist? At what point do you go over? And again, we had to convince her that this seemed like, where she was, that was probably the best thing for her.

Dr. Joe Straton: When I'm teaching medical students and nursing students and medical residents and others, I would say it in this way. I would say, gosh, palliative care is such a good thing that we offer. It shouldn't be reserved just for people who are dying. It's really for, you know, anyone at any point that they can benefit from greater expertise and pain and symptom management, among everything else that we talked about. I'm a family doctor. I've had additional training and certification in hospice and palliative medicine. I'm not an oncologist. You know, I'm not a cardiologist. I'm not a pulmonologist.

Right now, when we think about oncologists, they've got so much going on, that they need to focus on in terms of all the chemotherapies, referring to radiation treatments, and looking at the scans. They can do what I do in palliative care. They've just got so much else on their plates that they're thinking about when we're visiting them, that I think that this is where...you know, in my relationships with the oncologists, they've often said, you know, I'm so grateful you're available, because I can refer to you to help with maybe, you know, the pain management, the nausea management, the others.

And they would say, because I'm just so busy making sure I see everybody and I'm getting the chemotherapy and everything else going. So, long way of answering the question, but just to give some background, let's say someone has pain that's not well managed currently in their cancer center setting, a referral to a palliative care specialist is a great idea because the palliative care specialist can focus on the pain management and really focus on that without the...I don't want to use the word distraction. I can't think of a better word, though, at the moment. Without all the work that needs to be done with, you know, the medications that oncologist is seeing and working on the chemotherapy regimens and everything else. The palliative care specialist has more time available to really focus on the symptoms and really think through carefully about the symptoms and how to manage them.

Estella?

Estella: Yes, I have a question, and I'm from Canada. I'm in Montreal. Sorry. It's a French word, and I have a question for you. Just the last comment you were talking about, but the palliative doctor should know the treatment the oncologist is going on in a patient, because the discomfort and all the symptoms that needs the palliative treatment are related to this treatment, this medication. This is specific medication. You said the palliative doctor is not necessarily an oncologist, not somebody who knows treatment, who knows the environment of this patient. I have this problem exactly with my oncologist. My oncologist is very focused on my treatment, and it's not taking care of other symptoms and think a symptom are...what do you say when it's...

Melissa Jenkins: Secondary symptoms?

Estella: Secondary symptoms. Yeah, it's not very concentrated on that. So, I have to go to my family doctor to compensate this lack of treatment, if I can say that. Maybe Canada is different than U.S., but patients are patients everywhere.

Melissa Jenkins: So, you're saying that your particular situation is that your oncologist just doesn't really have the time or the wherewithal to manage all the other things, and you're forced to go to your primary care doctor to get the additional care that you need. Would that be maybe a time that you could research or find or ask for a referral to a palliative care team or not? Is that the question kind of? I know it's more of a comment.

Estella: Yeah, it's a question, and in fact, here, I don't know if we have a palliative care team especially, but I refer to my family doctor. She is now my...

Melissa Jenkins: Palliative care specialist?

Estella: Yes. Yeah, the person who takes all the things that the oncology is not...she don't want to manage with it. Take an aspirin, take a Gravol [anti-nausea medicine], take these or that.

Dr. Joe Straton: Right. I thank you so much for everything you described. I'm just looking as we're talking, and I see that there's palliative care, it looks like, offered through McGill. There are some other resources in Montreal, but to answer your question, which is such an important question, as I said, I'm not an oncologist, but I work very, very closely with oncologists. And when I see someone for palliative care who was receiving cancer treatment, I want to make sure that I know the medicines that they're taking. I want to know for two reasons.

One, you know, as we know, there are many cancer treatments that cause symptoms, many cancer treatments that cause nausea or constipation or pins and needles types of pain. I want to be aware of what types of issues somebody may be experiencing because of the cancer treatment itself. I also want to make sure that I know that any medicine I prescribe is not going to interfere with any of their other medicines, especially their cancer medicine.

So, I agree. While I say, you know, I'm not an oncologist, I need to work very, very closely with the oncology team and be aware of all the medicines that a person is taking, you know, A., to make sure that I'm thinking carefully about which of the medicines may be causing the symptoms the person is having, and how to best treat those symptoms and how not to interfere by prescribing a medicine that's going to cause additional problems with the cancer treatment.

One of the things, you know, I acknowledge is that doctors are human, as we know, and one of the things about doctors being human is that we're insecure. We're insecure. We don't like to be in a situation where we aren't the expert, that we don't know what we're talking about, and some of us are okay saying, my gosh, I don't know the answer to that. Let me refer to somebody who does. Some of us are okay saying, gosh, you know, I don't know the answer, but I'll look into it and work with you on this. Some of us just avoid anything that's causing us to feel insecure.

You know, I don't know the situation with a specific doctors, but I do know that sometimes doctors will focus, in the meeting, on the stuff that we're comfortable focusing on, and we'll just ignore the other stuff, and that's not good.

That's not good. That's a problem, and that's where, you know, being able to...trying to advocate for ourselves is really very important. If I'm having pain, if I'm having nausea, if I'm constipated, those are some of the main things. If I'm short of breath and it doesn't come up within my conversation with the doctor, please, please, please, advocate for yourself. Let's say it's pain. You know, we haven't talked about it, but I want to ask for your help. I'm having really severe pain in my belly, and it's causing me a lot of problems. Who can I reach out to for help with this? And that way, we're acknowledging it.

We're stating it's important. We're stating that we need help. We're also not putting the doctor on the spot to be the one who's going to do it, but at the very least, I believe, they should say, yes, that's an important problem, and let me refer you to a colleague of mine.

I feel badly for you that kind of the oncologist isn't really asking about it or addressing it, and so, it's being left to your family doctor, who may or may not have the skills to deal with it, but please, advocate, and just ask. You know, I'm having this issue. Who can help me with this?

Estella: Thank you, but yes, I do. I push him, but there no answer, I go and push my family doctor.

Dr. Joe Straton: Good. Good. Good. Yes, and I see our moderators put in some palliative care options in Canada and Montreal.

Estella: Yeah, I see the link. Yes, thank you.

Dr. Joe Straton: It may be really helpful to say to the family doctor, you know, are these places I should look to for assistance, as well?

Speaking as a family doctor, in my training, I received no expert training in how to manage pain and other symptoms. I had to get that after I finished my family medicine residency. It's just not an area that we're trained to typically...doesn't mean we shouldn't know it.

Estella: Well, it's the best I have now.

Dr. Joe Straton: I'm so glad. So glad. Yes.

Estella: Thank you. Thank you very much.

Melissa Jenkins: Two questions, unless somebody else wants to jump in, but one is nutritional services for people who might need. Is that covered under an appetite and...I don't know, I guess the whole nutrition aspect, is that even supplement...and you know, helping with that, is that under palliative at all, especially when you have problems with your eating in general?

And then second question is more the psychological services, like depression and anxiety management. Is that separate, or can that also be under palliative?

Dr. Joe Straton: It can be under palliative, and it also may be offered through the oncology or the cancer treatment center where we're receiving care.

Let's start with nutrition. For those of us with advanced cancer, we know that the cancer itself can affect our appetite, and that could lead us to not nourishing ourselves the way that our bodies need to be, and so, there are medicines that can be helpful to increase appetite.

We also know that, gosh, nausea, which many of us experience, either because of the medicines we're receiving or just it comes with the illness itself also gets in the way of our keeping ourselves nourished.

So, palliative care specialists should have expertise in thinking through issues relating to nausea, to loss of appetite, and to how to best nourish ourselves through those. Often, our oncology teams may have someone who has that expertise, as well. Always important to raise the question to our oncologists. Raise the issues of, you know, I've lost my appetite, I'm nauseous, I can't stay well nourished. I need help. They may direct us to someone in the cancer center itself. They may direct us to palliative care. If they don't direct us to anybody, please ask. You know, I think it'd be helpful for me to meet with a nutritionist or a palliative care specialist to address this.

With regard to depression, anxiety, worry, the cancer treatment teams I work with are multidisciplinary and will have very good psychosocial support. And palliative care teams also should have very good psychosocial support. A lot of the work that I and my team do is related to anxiety, depression, appetite, and a lot of it is related to kind of worry. For any of us who is sick, there's a lot of worry that comes with that. That isn't necessarily depression that needs medication and treatment. It's that we're worried about a lot of things that are going on around us, and all of that would be paid for by insurance. You know, seeing a clinician to help with that would be paid for by insurance.

Again, there's no standard for palliative care. There's no insurance-set standard of palliative care must offer, but most palliative care clinicians and most palliative care teams know that these are things that we need to have expertise in helping with.

Other questions related to that? That's a huge part of our experience as people with cancer.

Melissa Jenkins: Well, I do...you say you go to people's homes. How does one get that? Is that commonplace, or is that because you're in a big city?

Dr. Joe Straton: It's not commonplace. It is not commonplace. And I think it's more readily offered in places with...you know, like cities or suburbs than it is in rural areas because of the distance between homes, but it's becoming more common, thank goodness. Over the last decade, as well, it's become more common to receive palliative care services at home. There are a lot of...and I know the Philadelphia/Southeast Pennsylvania region best.

There are a lot of homecare agencies that are now adding in palliative care specialists who can come to the home for visits as part of the home health experience, as part of people who are receiving home health. In our area, there are home health agencies that have hired physicians and nurse practitioners to see patients in their homes, to help with pain and other symptoms, and all of the palliative care needs that we just discussed. And that would be paid for as a home visit or like, a home physician visit. The side that would be paid for would be covered by insurance or maybe a co-pay for that, but it would be covered, for insurance, the same way as a physician would be.

Melissa Jenkins: Can sometimes somebody be assigned to a patient, that the patient would always go to, like a nurse? Do you often get assigned a person for that...

Dr. Joe Straton: In the home or just in general?

Melissa Jenkins: In general.

Dr. Joe Straton: In general? Not that I'm familiar with. I think that that would be our choice of who we would like to see, in the same way that we could choose, you know, which specialist we would like to see. The only difference is that there are a lot more heart doctors than there are palliative care specialists. So, maybe just one at a given area. So, that would be where we might not have the choice, but when there's more than one, we would have our choice. It wouldn't be an assignment.

Melissa Jenkins: How about support for caregivers within palliative care? Is that something that's offered?

Dr. Joe Straton: Yes. Typically, it is. Absolutely, and palliative care is best delivered by a team, and there would be a social worker on the team who would best be able to direct people to services that can help with caregiver issues. I, as a physician, I know a lot in my area about the kind of caregiving supports that are available. The social workers know a lot more than I do.

I know, that at the very least, that it's part of my job to ask and to listen and to find out what kinds of concerns there are related to caregiving and to reach out to others to find out, you know, how do we assist with these? In the palliative care, the program we call advanced illness management in my current work setting, we think of caregiving as one of the domains that we ask all of our patients about. And we ask about it in two ways. One is are there caregiving gaps? You know, is there help that is needed with caregiving that you currently don't have available to you?

That's number one, and number two, is for the caregivers who are involved, what kind of a assistance do they need? Do they need more help in certain areas? Are there areas related to food or food delivery or availability of caregiving services or feeling overwhelmed by caregiving that they need assistance with?

I always think of caregiving as one of the most important areas of thinking about for people who can benefit for palliative care services.

Melissa Jenkins: You know, again, the oncologists are so busy, and so are the oncology nurses. Is the palliative care team also there to help coordinate the care?

Dr. Joe Straton: I think so. Let me dive into that a little bit. I think it's going to be really helpful through a palliative care perspective in terms of coordinating care. When I think about palliative care, specifically that we've got a bit more time than other clinicians do. Finding out, you know, what things about our illnesses, my patient's illness, do they need more help understanding, is one of the things. Healthcare can be like a machine, in a way, where we're just kind of pushed through, and we're told, you know, I have this. You need to get this treatment. Now this is going on. You need this treatment, and sometimes I don't have a full understanding...I, as a patient, don't have a full understanding of what are my diagnoses? How are these treatments helpful? How might the treatments be causing some issues for me?

And so, the palliative care clinicians can be very helpful in talking about that and thinking about that. And then, in coordinating treatments also, sometimes, for those of us who are receiving radiation treatments. Sometimes we are told that we need to get radiation treatments five times a week for six weeks. You know, that's 30 treatments. Sometimes, as a palliative care clinician, I can reach out to the oncologist or the radiation oncologist and say, you know, gosh, it's a lot going on right here to get the treatment five times a week for six weeks in a row. Is there a way to augment the treatment? And sometimes the radiation oncologist will say, you know, that's a great point. One thing that we can do in this situation is give one treatment a week for seven weeks. So, instead of 30 visits, it turns down to seven visits. And so, you know, there's this collaborative way of approaching the best way to provide the treatment that benefits somebody as they need it.

And the other, in terms of coordinating, often, the palliative care...often, in my time in palliative care and spending time with the patient, you know, I'll hear, gosh, I've got three oncology visits this week, or I've got three visits over the next two weeks with the oncologist, one with the lung doctor, and one with a family doctor. They're all in the same building, and I'll say, well, let me call these docs and see if we can get, you know, two of them on the same day so it's one less trip, and trying to intervene in that way.

Unfortunately, in our healthcare system, naturally, it's easier for docs to get in touch with a doc than it is for a patient to get in touch with a doc, and so, you know, those are things that I'll try to take advantage of, to reach out and say, you know, I'm seeing Mrs. Smith, and she's got all this going on, and they have to come in three weeks. Is there a way that we can kind of put a few of these appointments on the same day to make it easier?

Melissa Jenkins: A real win-win for everybody. Boy.

Dr. Joe Straton: Yes. Yes.

Melissa Jenkins: Amazing. If there are no more questions, Joe, do you have a summary of anything? Anybody, questions?

By the way, he also mentioned to me he's available a little bit more at the end of next week if we have more questions. We can go to him. So, if you have things that you think about, you know, we're going to be meeting up in our meetups all week. So, if we come up with stuff, we can go back to Joe. Thank you for that, by the way.

Dr. Joe Straton: Oh, absolutely. Really, I can't tell you what an honor it is to be here with you. I mean that sincerely. Just in my own experience, my older brother died when he was in his 20s of a brain tumor, and that was my first exposure to the needs of people with an advanced illness for getting the support we need. The healthcare system's not really well designed for that. And then my dad died in the hospital, and he was 79. My mom died just three years ago. She was 96. Unbelievable, amazing life.

But you know, through all of these experiences of...it's not so much the death experience. It's just, you know, the experience of being in the healthcare system in a way that there are a lot of needs. That all educated me a lot about the kind of help that we can all use, that our healthcare system's not well designed to provide. And then, throughout my career, working with people who are facing a variety of illnesses and all that comes with it. It's a blessing for me to be involved in these moments, and so, it's just an honor to be here with you. I learn so much every time I meet with people about different things that we need to do.

What I enjoy is building better programs to meet the needs, the unmet needs that are out there. That's the other thing that I was thinking about, is what are the unmet needs? And sometimes, you know, I don't need to be in severe, excruciating pain to have an unmet need. That should be addressed. And you know, I encourage all of us to think about what are the things going on? What are the things going on that are unmet, and who can I reach out to, to help meet these needs? I was raised in a family that was very stoic, you know? We don't complain. We don't say anything.

We keep our issues to ourselves, and I encourage all of us to be less stoic or not be stoic. Let's advocate for ourselves, because we're the only ones who really can. And you know, along those lines, even though the healthcare system isn't well designed to meet our needs, I know that the people who are on the front lines of healthcare really want to meet our needs, and so, it's important for us to share those, and I think of sharing them in a way of not that we expect every doctor to have the expertise to deal with that specific individual issue. They may or may not, but they very likely know who can be helpful. 

So, you know, to raise...from all the work that I do, I know that it's often the daughter or the daughter-in-law who's very involved in helping. My parents only had three sons, so there were no daughters. So, we sons learned that we had to step up and do all these things, which taught me a lot, as well.

And so, really important for us to think about...when I think about unmet needs, there are the physical symptoms, there are the emotional issues. Then there are the caregiving issues. There are the financial issues. There are, you know, spiritual issues, and there's also the, gosh, my body's changing. Who am I now? I can't do all the things I used to be able to do. What does that mean for who I am? You know, I think of all of those things as really important areas that affect us, affect our thinking, and are really important for us to raise and talk about and ask people, who can help me with these things?

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