Caring full circle: Managing your needs as you care for your patients

Join experts Pamela Ginsberg, PhD, Lisa Capparella, LCSW, OSW-C, FAOSW, and Kimberly Curseen, MD, as they discuss strategies to manage emerging workplace safety concerns and empathy fatigue, as well as palliative care in a modern world.

We encourage you to attend both sessions, though this is not required. Please register for each session separately. Free CEs for each session may be available in your discipline.* CEs are only available to those who attend the webinars live, not by watching the recordings. 

If you have questions or need accommodations to participate in these programs, please contact Living Beyond Breast Cancer at HCP@lbbc.org.

SESSION I: Workplace safety and emotional health in a changing world

Thursday, September 12 | 12:00 – 1:00 p.m. (ET)

Healthcare providers practice in demanding and increasingly stressful environments. It can be difficult for providers to prioritize their own emotional well-being while caring for others, though it is essential to do so. Join Pamela Ginsberg, PhD, and Lisa Capparella, LCSW, OSW-C, FAOSW, to learn how to:

• Navigate the impact of high-stress healthcare settings
• Recognize and address compassion fatigue while nurturing compassion satisfaction
• Learn practical coping strategies for dealing with grief and loss within patient care
• Explore a variety of individual and group techniques for maintaining emotional well-being

SESSION II: New perspectives and practices in palliative care

Friday, September 27 | 2:00 – 3:00 p.m. (ET)

Join us to hear Kimberly Curseen, MD, share the latest advances and opportunities in palliative care. Healthcare providers can expect to learn about:

• Changes in the landscape of palliative care
• Strategies for identifying and easing patient and caregiver distress
• Advocating for optimal patient care within the multidisciplinary team
• Evolving and prolonged relationships with patients across the continuum of care
• Ways to cope with patient suffering

*Contact hours/CE applications

• Nursing: 
  • Session I: This nursing continuing professional development activity was approved by Montana Nurses Association, an accredited approver with distinction by the American Nurses Credentialing Center’s Commission on Accreditation. 
  • Session II: This nursing continuing professional development activity was approved by Montana Nurses Association, an accredited approver with distinction by the American Nurses Credentialing Center’s Commission on Accreditation.
• Social work:
  • Session I: This program is approved by the National Association of Social Workers (Approval # 886556304-9099) for 1 continuing education contact hours.
  • Session II: This program is Approved by the National Association of Social Workers (Approval # 886556304-4710) for 1 continuing education contact hours.
• Patient Advocates:
  • Session II: This program is pending approval by the Patient Advocate Certification Board to satisfy the requirements for Board Certified Patient Advocates (BCPA).

This webinar series was supported by the Grant or Cooperative Agreement Number 1 NU58DP006672, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Transcripts

• Session I
• Session II

Session I: Workplace safety and emotional health in a changing world

InComm (00:05:06):

Greetings, and welcome to today’s healthcare provider program brought to you by Living Beyond Breast Cancer. At this time, all participants are in a listen-only mode. This webinar is being recorded. I would now like to turn the program over to your host, Stefanie Washburn.

Stefanie Washburn, LBBC (00:05:29):

Hi, everybody, and welcome to today’s healthcare provider program on workplace safety and emotional health in a changing world. This is the first session in our two-part series Caring full circle: Managing your needs as you care for your patients. We’re glad you could join us.

My name is Stefanie Washburn, and I’m the manager of healthcare provider outreach at Living Beyond Breast Cancer, or LBBC. I’m pleased to serve as your moderator today. In case you’re just getting to know us at LBBC, we’re a national nonprofit organization that provides trusted information and a community of support to people affected by breast cancer.

This program is part of LBBC’s Young Women’s Initiative, which provides resources created for people diagnosed with breast cancer before age 45. This initiative began in 2011 when we were awarded a cooperative agreement with the Centers for Disease Control and Prevention to expand our programming.

We selected today’s topic because of the challenge we know many people experience working in health care. Our speakers, Dr. Pamela Ginsberg and Lisa Capparella, will help us understand the impact of high-stress environments and strategies for managing emotional health. We thank Dr. Ginsberg and Lisa for sharing their time and insights with us today, and you’ll learn more about them both shortly.

Stefanie Washburn, LBBC (00:06:56):

We’d like to draw your attention to several LBBC resources we hope will be helpful to you.

The second session in this webinar series for providers, New perspectives and practices in palliative care, will be held on Friday, September 27, at 2 p.m., eastern time. If you’re not already registered, please join us. You can see the URL right there on the screen (https://www.lbbc.org/community/events/caring-full-circle).

We also have a four-part Innovation in care series for your patients starting on September 17. Sessions will cover shared decision-making, innovations in treatment and side effect management, understanding testing, and financial and time toxicity. Patients can register at lbbc.org/innovations, and you are also welcome to join us. Please note that CEs are not available for that program.

LBBC also has tips and information to help your patients manage their own emotional health at lbbc.org/emotional-health.

You will receive links by email after the program so you can share this information with your patients and colleagues. Now let’s move on to a few final details before the presentation.

Stefanie Washburn, LBBC (00:08:09):

Today we’re going to use the chat to connect during the program. I know that some of you have already started doing that — thank you — and you will see the chat icon at the bottom of your screen.

We’ll also be using the Q&A feature. Please submit your questions for our presenters at any time. We ask that you frame your questions so they can be helpful to all participants. Our speakers will respond to as many questions as possible after their presentation. You can set up closed captioning by going to the button at the bottom of your screen.

We’ll be emailing you a link to the evaluation after the program. Your feedback is really important to us in planning future webinars and we appreciate you taking the time to share your input.

Now, just a few words about contact hours and CEs. This activity was approved by Montana Nurses Association, an accredited approver with distinction by the American Nurses Credentialing Center’s Commission on Accreditation for one contact hour.

It was also approved by the National Association of Social Workers for one CE. If you’ve registered to receive contact hours or CEs, you’re required to participate in the entire live webinar today and complete the evaluation by September 26. You will then be emailed your continuing ed certificate by October 24. Certificates of participation will also be available upon request for providers from other disciplines.

None of the planners or presenters for this educational activity have relevant financial relationships to disclose with ineligible companies except for the program’s nurse planner, Lori Ranallo, who has been a speaker for Myriad Genetics. All of the relevant financial relationships listed for this individual have been mitigated.

We are recording this session and we’ll post it on the program webpage later this month. We’ll notify you via email when the recording is available.

Stefanie Washburn, LBBC (00:10:04):

It’s now my pleasure to introduce our expert speakers.

Dr. Pamela Ginsberg is a psychologist who specializes in working with women and health. Throughout her career, she has helped countless people make real changes to live happier, more fulfilling lives. Dr. Ginsberg helps people understand what blocks them from reaching their goals, teaches them how to make better decisions, set priorities, and create and implement action plans to achieve their goals.

Dr. Ginsberg has a special interest in working with women with cancer at all stages, but also works with women facing any medical challenge. She provides support and guidance for medical decision-making and navigating the confusing world of serious illness. Her work in health psychology also includes working with family members who serve as caregivers for an ill loved one. Dr. Ginsberg also specializes in grief and bereavement, helping those who experienced a loss to understand confusing emotions and navigate the process of normal or complicated grief. She’s also a member of LBBC’s Medical Advisory Board.

Dr. Ginsberg, we’re happy to have you with us today.

Also joining us is Lisa Capparella, who brings over 18 years of dedicated experience in oncology social work to her role as associate director of patient and community engagement at NCI Comprehensive-designated Thomas Jefferson University Hospital.

Passionate about improving patient outcomes, Lisa focuses on developing and evaluating innovative programs aimed at alleviating symptom burden and enhancing quality of life for cancer patients. Her expertise extends to integrative oncology where she actively contributes to research and publications. Lisa champions patient-centered by leading initiatives that prioritize patient input, including the Patient and Family Advisory Council.

Recognized as the 2023 oncology social worker of the year, Lisa’s commitment to excellent and compassionate care drives her ongoing contributions to the field.

Welcome, Dr. Ginsberg and Lisa.

Lisa, please join us on screen to share your presentation, and I’ll now turn things over to you.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:12:21):

Good morning. Thank you so much for the warm welcome. It’s been such a sincere pleasure to be invited by LBBC to do this talk with Dr. Ginsberg. We’ve had a lot of fun talking about our topic and what we’re going to address today. Give me one second. I’m going to share my screen.

Just a couple of very quick objectives to go over in order to obtain our CEs. We are going to talk a little bit about navigating impact of high-stress healthcare settings and really how that’s come about during COVID and pos-COVID. We’re going to recognize and address compassion fatigue while nurturing compassion satisfaction. Dr. Ginsberg is going to lead us through some practical coping strategies that we can use while we’re exploring grief and loss with patient care. And working with a variety of things individually with group techniques for maintaining emotional well-being while we’re doing this very important work that we do every day.

I wanted to start with what’s happening in the last, let’s say 5 to 10 years, in health care. There’s been a lot of technology advancements. So 96% of hospitals have adopted electronic health records, which can be a good thing and it can improve data accuracy and better patient coordination. But also there’s a lot of things that come into play with patients who don’t have the technology to be able to access that and divides that are being created. The Affordable Care Act gave more access to health care, so more patients are coming to the healthcare system. Then the aging population, of course, the boomers are continuing to get older by 2030, 20% of the population will be over 65 showing a demand in elder care and specific programs related to those who are over the age of 65.

And with that, we’re also seeing an increase on pressure of healthcare providers. Many of us are seeing this especially in oncology care, but with the amount of patients who are being seen through survivorship and long-term care management, healthcare providers are reporting at least a 44% report of burnout. And interestingly, when we’ve talked about this, all of you have turned on the news. Those of you who are like me, who refuse to watch the news, are seeing a rise in workplace violence of over 47% increase in incidents. We’re going to share a little bit more about that as well.

I pulled a bunch of these reports and resources, which we’ll share at the end as well, that talked about critical topics such as the workplace violence, mental health struggles that are going on with healthcare workers, and impact of policy changes and new technologies being integrated. After my portion of our talk, Dr. Ginsberg will share practical strategies to help any of us prevent burnout, compassion fatigue, which is so very important to our mental health and well-being at this time.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:15:02):

And so why is this so important? We’ve talked about this a little bit, but physical and mental health, the OSHA report is showing that there’s at least a 34% increase in physical injuries that have been happening at workplace. This has also increased in healthcare providers specifically. A 41% increase in mental health issues that are going on as well. And then sometimes when we’re feeling burnout and or stress, there’s more opportunity to prevent errors in patient charts or things that are happening that wrong medications that might be given. There’s a variety of issues that can happen in reference to errors that are happening.

Sometimes we do like to institute a little bit of humor. And of course this slide can be funny, but also for those of us that are in this type of world, we are seeing things like this. Workplace violence is increasingly pressing issue impacting a wide range of healthcare professionals. And while it’s been increasing since COVID, it’s really been something that we’re seeing. We’re seeing nurses being stabbed, violence being talked about during the hospitals, patients putting us in situations that we’re not used to being put in. They’re really rising. And there’s a lot of things that are under reported.

When I was looking at this, the rates of verbal abuse and physical violence, which had been reported prepandemic were 44% to 66% and are now reporting to be close to 80%, especially in oncology. Those things are patients are being faced with an advanced illness, they’re scared, they’re worried, they’re anxious, and those types of things end up really impacting the patient care and the way in which they’re treating folks around them.

This has an effect on all of us, all of us who are working in this. There could be physical effects that are happening if you’re hurt during a trauma or a patient does physically attack a patient, there can be an increase in anxiety and depression, post-traumatic stress disorder, decrease in job satisfaction. So it’s important to our healthcare providers who are providing us with jobs to pay attention to this. We already are seeing an influx of social workers, nurses, physicians, people leaving the field due to the increased demands that we’re facing in the world.

It has an impact on patient care. As I talked about in the previous slide, if we’re leaving and new staff is coming over, there’s turnaround changes, there’s opportunity for hours that are happening. And then as we leave positions or places, there’s economic consequences to this of course too, right?

As we all know, it can cost a lot of money to hire and train new staff. And really it’s very important to keep our staff and keep them as safe as possible.

And so which risk factors? Many of you probably already know many of these, but we might be working with people who are volatile, people who are using drugs or alcohol. We might be working in understaffed positions. We’re seeing this a lot in hospital cares. Inpatient and outpatient we’re seeing this. There’s an opportunity for patients to be waiting for a long time. There might be a delay that’s not being communicated to patients, which can cause frustration and anxiety as well. Transporting patients to different locations or having them have their care in different areas. Of the hospital can also create issues. Inadequate security that we’re seeing, and the hospitals can be open to the public in certain areas.

I want to get back to some of the statistics. As I was reading this, I started looking, I really wanted to look at data post 2020 because it seems that things have really increased during that time. And as you can see on the left-hand side, you see the private industry is not impacted greatly by physical violence, but hospitals and nursing homes, residential care facilities, people working in social assistance offices are much more likely to report any kind of physical but nonfatal assault that’s coming into the hospital and impacting our healthcare workers. And again, as you can read here on the side, it says, “The sad irony is every day that I head off to work, I worry that I might end up in a hospital.”

To share a little bit more about what folks are experiencing, this was this particular study that was done in 2023 impacting nurses that have come across the board, and keep in mind that some of this is also underreported, but we might be seeing these things. We’re seeing staff that might be physically assaulted, shot, firearms, scratching, biting, hitting, sexually assaulted and or harassed, objects being thrown at them, or other intimidation criteria that’s been impacting staff members here by patients or at the bedside.

I don’t want to be a Debbie Downer, but I think the pressure that’s been on us to overperform, to see more patients, to streamline everything has been really important. It can really impact our mental health and our well-being, which is why I think it’s so important. We’ve been called to this field, many of us because we have a passion for this. We want to work with patients, we want to work with folks and help them. That’s kind of why we’ve entered this field. But some of us may also be feeling a level of compassion fatigue and/or anxiety around our work and the amount of things that we need to come up with. I just wanted to point out that the numbers are here to support why we might be feeling more stressed than we had been in the past.

To take a little bit of a spin, some of you may work in healthcare settings that had large responses to things during the pandemic and postpandemic, and while some of these programs may have faltered or sort of fallen off the wayside here at the Sidney Kimmel Cancer Center, we’ve really expanded care to be multicentric. So things that could be offered individually to people in a variety of different programs.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:20:46):

I’m going to share on my next slide as well, but we offered entirely integrated behavioral health programs, so our staff could be seen by our psychiatry department here at the hospital. We had rise, which was supported by our nurses and spiritual care department who were offering services. We had Jefferson Be Well programs, things like a yoga meditation program. We had group programs and individual programs. We adopted departments and other opportunities to help support one another. While many of these programs do still exist, what we found was a lot of the group programs fell by the wayside and the individual support was what people were looking for.

We created opportunities for an enhanced EAP [employee assistance program] and an opportunity also for people to be able to do clinical therapy via virtual attendance that was outside of the EAP benefit and also lower the copays and the rates for all the mental health services that our staff could access.

This is much like Maslow’s hierarchy for those of you who are familiar with this, but if you don’t have the bottom net, it’s very hard to meet the top higher level needs. We ended up doing self-help resources, so people could use EAP, they could look at recorded mindfulness type sessions. Then we did local units, so we might go to a local unit in the hospital and provide support or education there and find out what those specific needs were for that particular unit. Then we offered peer support. So one of us might provide one-on-one direct peer support. And then we ended up offering professional support, which was much more one-on-one related care, which is actually what’s been more sought after for our current staff right now.

We’ve offered things like Schwartz Center rounds as well. For those of you who are maybe familiar with that, it’s been something where there’s usually cases or discussions that are brought up. We actually had a staff member who was shot by another staff member, and it was very hard for our staff to really kind of go through what that was like, what that felt like. There was survivor’s guilt, there was a lot of safety concerns, how might we keep ourselves safe, what we do for gun control, and things of that nature in our hospital. So we banded together to kind of figure out what resources we could do and found that there were lots of other hospitals and organizations. — if you want to share the chat, maybe something that you liked or that worked well for your organization as well, you certainly can — but I saw the Cleveland Clinic was offering well-being rooms. Mayo Clinic, New York Presbyterian, Johns Hopkins, a variety of places came together to create a really comprehensive level of support.

This was an article here that we’re showing on the slide from the New England Journal of Medicine that we had published in 2021 showing really the need of what our services were. The bottom graph is about our patients who were in the hospital, those who had passed, those who were on ventilators, and then the top graph is the access from staff as to who is attending programs. At the height of our programs, for one month we had over 1,400 people who were coming to programs or attending any kind of support they could get for well-being during that time. And it did sort of mimic for a while, as you can see, if anybody remembers the pandemic, the surges that started happening in the spring and then it kind of fell off for a little bit and started to truck back up probably in the fall when the flu and different variants started coming out from COVID-19.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:24:16):

I just want to take a chance. I know we can’t unmute and share, but you’re welcome to think about any of these or share your own experiences that you want to in reference to: Why does this all matter and how does this connect with Dr. Ginsberg part of the conversation?

Well, we know that we’re stressed. We know there’s a lot of things that are going on. We know the demands are high for healthcare providers, but there’s so much support that we can do for ourselves with individual techniques that we can learn to refuel ourselves really, for the reason as to why we go to work every day.

And so I just wanted to share a quick response, I’m going to answer actually, for employee well-being.

For me, I was a poster child. I tried all the different little therapy services that the hospital had created. I had run Schwartz Center rounds at the time for the hospital. We created some pet therapy options, and brought in some different dogs to provide relief and had them in different waiting rooms and sent out announcements to everybody during that time. So one of my most favorite things to partake in is, in order for us to have pet therapy, mindfulness programs, and to support our staff, because they’re our most valuable asset in taking care of all of our patients who really need us day in and day out. I’m going to invite Dr. Ginsberg on screen and if she maybe wants to share one of hers and head into some things that we can do together and work together. But thank you.

Pamela J. Ginsberg, PhD (00:25:38):

Thank you, Lisa. I appreciate that. And thank you to all of you who are here today. And this is a great entryway into my portion of this, which is going to be about understanding compassion fatigue or empathy fatigue and really talking about strategies.

Lisa mentioned burnout a number of times and also the word compassion fatigue and empathy fatigue, and it’s hard to know what’s what in that.

Burnout really technically refers to kind of workplace structural stressors such as the violence issues that Lisa has been talking about, volume issues, tech issues. So it’s more about the structure.

Compassion fatigue, which is also known as empathy fatigue, is really about the emotional impact of the type of work that we all do, because we know that doing this kind of work, we are human beings and this has an impact on us, and we have to recognize what the impact is. We have to recognize within ourselves when we are in a danger zone with how much of an impact this is having, and we have to have strategies for what to do about it. As Lisa was saying, what specifically to do about it for you individually. It’s nice to have all of those resources available, it’s wonderful actually that those resources are available, but you need to know for you what works personally.

Let’s talk about compassion fatigue and empathy fatigue, which is distress caused by helping others. We are in a profession where we are helping others, and so it is an emotionally heavy job, and so distress is part of the game. What we need to know is that this can lead to extreme states of tension and preoccupation with other people’s suffering. And one of the reasons why we see that is that we over identify with other people sometimes. Sometimes there’s somebody who comes through that we know that person personally or that person is in a similar or the same situation as we are. They have the kids the same age or they are the same age, they live in the same neighborhood or your kids go to school together, or something like that. So it’s very easy to begin to overidentify with a patient, which can bring on more empathy than you have for say, other patients. So the tension, the preoccupation with suffering certainly can happen. And that overidentifying brings us to that.

The opposite end of that continuum is that we disconnect so we can overfeel or we can underfeel. And sometimes we find ourselves disconnecting emotionally in order to protect ourselves. We detach, we numb out. And so that’s apathy, really is the turning off of emotion, and overidentifying is the over responding side of that.

Pamela J. Ginsberg, PhD (00:28:45):

It’s not just uncomfortable when we are experiencing compassion fatigue, it has an impact on our work and it has an impact on our effectiveness. All of these things — apathy, isolation, bottled up, emotion — all of these things can lead to poor judgment on our part. And poor judgment and emotional fatigue leads to errors. And so it is really important that you recognize that compassion fatigue is not just something that’s uncomfortable for you, where you feel tired and wiped out and burnt out. It is really important that you recognize that it’s dangerous, which is why you have a responsibility to be able to recognize what your particular symptoms of this are, because these symptoms can bleed into your personal life and they certainly can affect your professionalism.

There is also this bottom little box here. It says, “Progressive loss of idealism, energy and sense of purpose.” And that progressive loss leads to a worsening and worsening of the impact of compassion fatigue. And once we’re kind of on that train, it’s hard to jump off. And many of us have experienced this, sometimes just temporarily, where we’re just kind of getting progressively more and more drained. And that’s why the strategies are really important. We need to be able to recognize this as early as possible so that we can actually do something about it.

Symptoms of compassion fatigue. It’s really important to know that this can develop slowly or it can develop suddenly. Most of the time this develops slowly where we’re just kind of burning out slowly but surely because we’re just tired, it’s just getting to us. But sometimes we see this develop suddenly and where we see it develop suddenly are some of the situations or instances that Lisa described, such as a violence incident. Or the pandemic was a great example of that where people just kind of suddenly were completely burnt out. Some incident happened in the pandemic where they saw something that was very difficult or they experienced something that was very difficult. So a particular incident can bring it on as well.

And what all of this leads to, and again, you can have both sides of this. You can have hypersensitivity and you can have a lack of sensitivity. And so I want you to know kind of which direction you go to, because again, you need to be able to recognize when this is happening.

For me personally, I know I go to lack of sensitivity. I start to lose my ability to have empathy. And that is always the big red flag for me, is when I’m having trouble empathizing with my patient.

What this leads to is dread, going to work, feeling that sense of dread. Dread at work leads to guilt, which leads to more dread. And there’s the train that begins to pull out of the station for us. And so when you’re feeling dread and that guilt cycle, it’s a warning sign for you that it’s time to do something about it.

Pamela J. Ginsberg, PhD (00:32:14):

These three key characteristics of compassion fatigue, if I could boil this down, I really want you looking for these three things: physical and emotional exhaustion, cynicism — feeling very cynical about your work — and inefficiency. Those are the three, they’re kind of the broad categories where if are recognizing these characteristics, any one of these characteristics in yourself, it is time to employ some of the strategies that we’re going to talk about in a few minutes.

These three things lead to what I call moral distress. We go into working with cancer patients for a reason. We are trying to help. We are trying to ease suffering. We are trying to get good patient outcomes, we’re trying to help people. And when we’re feeling this way, it becomes very difficult to help people. And so we can no longer provide our A-plus care when we are drained, when we are feeling exhausted or cynical and being inefficient.

We then have to deal with, additionally, a moral dilemma, which is “I’m not doing a good job here. I’m not doing what I know how to do. I’m compromising my professional values and my personal values.” When we have to act in a way that’s inconsistent with our values, it is exhausting. It is even more exhausting, it adds to the exhaustion. So again, we’re talking about that train and what happens when we’re on that train.

So what helps? I want to talk about strategies. In all of my talks, I always talk about strategies. I think they are really important. So these are the things that are protective for you: compassion satisfaction — which I’ll describe in a second — self-care, social support, and cognitive set. And I’m going to talk about all four of these things and why they are protective.

What I want to make very clear is that it is your responsibility to create your own personal tool belt. Any combination of any of these things is going to be helpful for you. And I encourage you to let yourself experiment with all of these things, with any one of these, any one or any number of these things, so that you can begin to understand what’s actually helpful for you. Because what’s helpful for you is not necessarily what’s going to be helpful for the next person.

Compassion satisfaction is not a term that most people are familiar with, but when we talk about compassion fatigue, compassion satisfaction is kind of the other end of that continuum. And compassion satisfaction really recognizes your ability to enjoy your work, to enjoy what you do, and to feel satisfied with what you do, and to find the meaning and purpose in what you do.

We all entered into this profession for a reason. Not everybody chooses to do work that’s so emotionally heavy, but you have chosen to do this emotionally heavy work. And most of us choose it because we want to make a difference. We want to feel that we’re making a difference. We want to feel like we’re easing somebody’s suffering.

Compassion satisfaction is connecting deeply to the reason why you chose this work to begin with. And I really want you to actually spend some time thinking about this, and maybe even doing a little bit of journaling about this. I always think writing helps us to process information. I really want you to understand this on a very deep level. Dig in.

What did you hope to get out of your profession before you started? What were your hopes about it? What meaning has it brought to your life, specifically for you? What meaning has this work brought to your life? What purpose do you personally serve to your patients? You personally, not the person who works in the office next to you, but just you personally. How do you personally make a difference? What are your strengths in your work? How do you feel like you make a difference? And how do you personally ease suffering through your work?

That will help you build what’s called compassion satisfaction, which helps to balance compassion fatigue.

Pamela J. Ginsberg, PhD (00:36:54):

This is just a graphic of that continuum, compassion satisfaction to compassion fatigue.

Loss is unavoidable in our profession, and we have to reach for compassion satisfaction in our work in order to manage the deeply emotional work of the losses. I want you connecting with the meaning in the losses, the sources of meaning in your work. Because if you only have losses and you have no meaning, then the losses take on such grave weight that there is nothing to balance that out.

What we need to know is that difficult life experiences are not meaningless. It is not meaningless when we have losses, but we can disconnect with the meaning when we’re exhausted. We all know that death does not indicate failure. We know that people are going to die and that that is not a failure on anybody’s part. But when we look for the wow moments, the moments of intense connection, spiritual experiences, incredible coincidences, those help to balance out the heaviness of the losses.

I know for me in my work, one of the areas of my work that gives me the most satisfaction is when I do end-of-life work. And people ask me all the time, how can you do this? But the truth is I can’t say I enjoy it, it’s not exactly the right word, but I derive deep, deep satisfaction from doing end-of-life counseling with people and really helping people talk through their experiences, their fears, their worries, all of it, life review, because not everybody can have those conversations. To be able to give people an opportunity to have those conversations, I think is very helpful, and I get so much satisfaction. And that helps to balance out the heaviness when that person does pass away. I want you thinking about what you can derive.

The other thing that’s really important for you to know, because I think that a lot of people who work in hospital settings especially, after a patient passes away, you probably have none to very little contact with family members after a patient passes away. I can tell you that I have contact with family members in my role in a private practice. I have a lot of contact with family members after a patient passes away. And I will tell you that family members remember your kindnesses. They remember the nurse that was outstanding, the social worker who was exceptional, the person who went out of their way to show kindness and empathy and softness during this extremely difficult period for them. So don’t you think for a second that you lose a patient and then nobody ever thinks about you again, because I promise you that your kindness and your empathy goes a very long way for patients’ families long after they’re gone.

There’s a proverb that says something like, if you help one person, you change the world. I’m a very big believer in that. So you have to understand the impact of your work.

Pamela J. Ginsberg, PhD (00:40:16):

Self-care. I always talk about this. I always have some version of this slide in almost every one of my presentations, whether I’m talking to patients or talking to healthcare workers.

Self-care is not optional. I have to say that again because we see it as optional. Self-care is not optional. Self-care is mandatory. And if you are not spending the time understanding how to take care of yourself in a way that works, then you are not doing a good enough job and you will never be able to manage a profession like this in the long term. And so you must invest in self-care.

These four pillars of self-care are the most basic foundational self care, and if you are not investing time in exercise, nutrition, sleep, and water intake, you cannot be okay. I want you to hear me very clearly about this because it’s so basic, but we forget. We just don’t think about these things. These four things are absolutely foundational. You cannot build a healthy house on a poor foundation, and you can’t serve from an empty vessel. You have got to find ways to refill the well.

The four pillars of self-care, I absolutely want you thinking about. But these other things too, pursuing hobbies and interests, doing stuff that is outside of the world of cancer, that really just is soulful for you, that makes you feel good, that makes you happy, that makes you feel satisfied, that has nothing to do with your skills in the workplace. Spiritual practices, obviously that’s very helpful for people. And so again, investing time in your spiritual practices can be very important. Investing time in your relationships, both within the workplace and outside of the workplace, and the relationship part of that, those experiences.

Mindfulness practices. Some people use mindfulness practices very regularly. Some people say “That’s a little too crunchy-granola for me, I’m not quite sure if I like that.” If there is one thing in terms of mindfulness practices that I do want you to at least experiment with and investigate a little bit, it is breathing exercises. So if you don’t know any breathing exercises, I want you to look up, just Google them. It’s very easy to find. I want you to look up two breathing exercises. One of them is called squared breathing. And the other one is called 4-7-8 breathing. What these breathing exercises do is they activate your parasympathetic nervous system, which is the rest and relax part of your nervous system. So when you are in a stressful situation at work or at home or wherever you are and you start to kind of feel your blood pressure rising, you feel yourself going into a bit of a panic about whatever is going on. I want you to be able to have those breathing exercises ready in the tool belt to use anywhere, anytime. I want you practicing them at home, practice them before you go to bed, practice them when you’re sitting at a red light. They’re simple, but they are extremely effective at activating that parasympathetic nervous system. You must have tools, you must have tools. And the more concrete the tools are, the easier they are to grab in difficult times.

Cognitive set. This is about how we think, how we think about things. It is important that we understand that we don’t have a whole lot of control over our emotional lives. That’s pretty automatic, but we do have control over our cognitive experiences, the way we think about things. And so we can choose to focus our attention this way or that way.

The way you think about something has a very direct impact on how you feel. And let me give you a simple example of this. If I’m walking down the street and I’m by myself and I see a man walking towards me and he’s looking at me directly, I am going to either think he recognizes me, I know him, or he thinks I’m pretty, or some thoughts that make me not feel afraid, that make me feel good actually. If I think that person is looking at me and intending to harm me, I’m going to feel a very different way.

So depending on my thought about the situation, my emotion follows. So the thought happens first, the emotion follows. And so we can choose how we think about things in a lot of different situations, and that means we can choose how we interpret our pain, how we interpret the difficulties that we encounter through our work. And I always want you, going back to that compassion satisfaction, I always want you looking for meaning, looking for the meaning in your work. There is a whole area of therapy called meaning-centered therapy that a lot of cancer centers are using with their patients because we’re looking for the meaning. We’re looking for meaning in our most difficult experiences. I always want you looking for the value in your work.

Pamela J. Ginsberg, PhD (00:45:46):

And this is just another way of saying the same thing, threat versus challenge appraisal. If we see a situation at work as a threat, we’re going to have a certain set of emotional responses and cognitive responses. If we see that same situation as a challenge, we’re going to have a different set of emotional responses and cognitive responses. So if I see a situation as being threatening, I’m going to react emotionally. I might feel very overwhelmed or anxious right away. Anxiety leads to paralysis. So I might get paralyzed and unable to think through the problem. The immediate thought might be, I can’t do this. I’m going to fall apart, and then I start using coping strategies that don’t work very well.

If I see that same situation as a challenge rather than a threat, then I can mobilize my psychological resources. OK, this is a situation that I’m not familiar with. What do I know about this? What can I do about this? I can begin to think through the problem. If I’m overwhelmed with emotion, it is very difficult to do this. So if I’m feeling challenged, I can then try new coping strategies. I can experiment with a new plan. I can ask for help. I can break the situation down into more manageable pieces. I can say to myself, where do I start?

I want you thinking to yourself in difficult situations, what can I learn from this situation? How can I grow in this situation? And what new skills must I develop to handle the situation more effectively in the future?

Again, this is just a way of shifting cognitive set or your cognition about a situation. It’s just another way to help yourself in these situations. And this is another area, I think, where journaling is actually very helpful. If you have a situation at work where you feel like you didn’t respond very well because you felt threatened and you just kind of got overwhelmed with emotion, this is a great time to go home and spend some time with understanding that and seeing it differently and seeing what comes from beginning to think about that in a different way.

That is the end of my slides. So I think we’re going to go onto our Q&A at this point.

Stefanie Washburn, LBBC (00:48:11):

Yes, we are. So first of all, let me thank you both, Lisa and Dr. Ginsberg. You were amazing, and you might not have been able to see in the chat because you were presenting, but there were all sorts of comments about the value and the meaning that this conversation has already had on the people who are part of it. And also there was a kind of robust discussion about self-care strategies and recommendations and tips that people were sharing about their personal experiences and things that they’re finding helpful. So I love that that has already been happening in this time that we have together. So thank you both so much

And thank you to our audience who’ve been really engaged. That is wonderful.

We’ve got about 15 minutes for questions. I wanted to start with a comment that came into the Q&A. I just want to read it, because it’s really significant what this person shares they have gone through and their colleagues. I just wanted to read it and see if either of you have any comments, and we’ll move into some questions.

The person who submitted this said, “I am so thankful for this education workshop. Last year I worked at a hospital where two nurses and a medical student were stabbed. It became too stressful for me to work there because I was worried about my personal safety. I requested a transfer to another hospital and finally moved.” I think moved to it or moved this past June. “I’m feeling less stressed, no longer having sleep disturbances or GI issues.”

I’m just curious kind of what that brings up for you, Lisa, and your experience, and you, Dr. Ginsberg, as well. Any comments or thoughts about this person’s experience?

And thank you to the person who shared that with us.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:49:51):

Absolutely. I think when we had the shooting that happened here at our hospital, I think it resonates with what you had written in there. There was so much fear that went about, and so I want to commend you for recognizing that maybe being in that position or that place was just too hard for you. I liken it to, and I don’t want to downplay this, but sometimes we have patients who want to come to a place that they’re familiar with for their support groups. And other times patients go, “It’s too triggering for me. It’s too anxiety-provoking for me. I need to go somewhere else.” So choosing to pay attention to all those stressors that Dr. Ginsberg talked about earlier and saying, “I think I need to change the scenery,” is really valuable. “Protecting your peace and protecting your mental health is so very important. And some patients were like, “I can’t leave. This is where I am. This is what I did.” And when the shooting happened here and others felt similarly to you and they felt chastised for leaving or they felt like they were in a difficult situation, but they did what they felt was best for them at the time. And I think that’s what’s most important.

Pamela J. Ginsberg, PhD (00:50:48):

And if I can just add to that, we are merely human. That’s all we are. We’re just human beings like everybody else. And there is a bit of a myth of professional immunity, that we should be able to rise above a situation like that. And if you can, fine, and if you can’t, fine. I don’t see that as a weakness at all. I think that it’s our personal responsibility to take care of ourselves, and we do what we need to do to take care of ourselves. There is no such thing as copping out when it comes to your safety.

Stefanie Washburn, LBBC (00:51:26):

Great. Thank you so much for your comments on that. And again, to the person who was willing to share that very personal situation, thank you for doing that.

I wanted to go back to a question that came in earlier related to something that you shared, Lisa, or I think you touched on it, which the question relates to kind of guiding students and people new to the profession in this very, very stressful time to enter health care —arguably it’s always stressful, but with everything going on — and just wondering if either or both of you could comment a little bit more on either things that you’ve done or you’ve seen or what you’d recommend to our colleagues who are newer to the field or to students who are joining the field.

Lisa Capparella, LCSW, OSW-C, FAOSW (00:52:12):

And I’d love to hear what Dr. Ginsberg has say about this too, but I do. We onboard about 10 to 12 students throughout the whole entire hospital, not just a cancer center here that I receive. We run a group supervision to allow people to work with others and learn what they’re doing. But I think it’s really important to help teach new nurses and social workers both what they’re going to see, what’s going to happen, and that their reaction to them is personal. Like Dr. Ginsberg said earlier, a way in which I react to something might be very different.

When I first started taking students, I’ve been doing this for 18 to 20 years now. And so sometimes we forget how traumatic this might be and that we’re expecting more of people to do at home. Before, if you were on IV antibiotics, you were in a hospital or a rehab facility, now you’re home and the families are taking care of people. So we’re seeing more sick people living longer. And I think being aware of that.

With a student of mine who recently took a job here, she was feeling overwhelmed with the amount of loss that she was experiencing here. And we had to think about, how might she talk about some of these wins Dr. Ginsberg talked about, because we focus on all the negatives. It’s really hard. Someone new to the community who’s never had a personal loss in their life or never had a personal loss that they’ve really worked with, a patient might be the first loss that they have, and how do they cope with that?

We came up with a thing that they wrote a note about the patient that brought them joy and they put it in a jar. So they had somewhere to put it and they had somewhere to put their grief. But I think working with your students or new employees in a way that feels meaningful to them. We talked a lot about meaning and purpose, it’s a huge portion of my work too, Dr. Ginsberg, finding that out for our own staff, what makes them tick, what makes them happy, How do they like being rewarded. And how do we harp in on some of those positive notions as well?

Pamela J. Ginsberg, PhD (00:53:53):

Yeah, and I think that what you’re saying, Lisa, is so important because again, we are willing to learn these things and give these things to our patients, and yet we’re not very good at learning these things for ourselves or for our staff. We have to see ourselves as being merely human and that we can break when things get too difficult. The things that you learn to talk to your patients about apply to you too. We have to humble ourselves a little bit to understand that, “OK, I need this stuff too,” and we have to value ourselves enough to invest in creating that tool belt that I talk about — that you are practicing on a regular basis, by the way. The tool belt is not the Band-Aid that happens after a problem. The tool belt is really about having practices that soothe your soul and create meaning and purpose for you throughout the course of your career and throughout the course of your life. It will serve you well to take care of yourself. And so that message needs to be normalized for healthcare workers.

Stefanie Washburn, LBBC (00:55:03):

Great. Thank you. Well, you are both doing an incredible job with normalizing it today, so I think that’s huge. And we’re already seeing responses from people about how much that matters.

A question, I’m thinking, somebody might’ve referenced this in the chat, although I’m not sure, but it was something that also had crossed my mind: Lisa, at the hospital where you work, you had described a little bit earlier a number of services and programs that you were able collectively to put into place to provide additional support. And I’m wondering if you could talk a little bit more about administrative level or system level, health system level, support for those kinds of programs and resources for healthcare providers. And do you have any tips or suggestions that people might be able to use if for some reason they have tried and their own health system hasn’t been as receptive, or just if they’re thinking about approaching administration, about developing some additional resources for providers?

Lisa Capparella, LCSW, OSW-C, FAOSW (00:56:03):

Absolutely, and I think the pandemic was something that was really hard. It forced us to think quick and have a reaction. We didn’t pre-plan, and now I think we’re doing that postpandemic and post-things that are happening. We’re starting to think how do we protect the mental health of the people who work here and support our patients, because otherwise we don’t have a good healthcare system.

I’m happy to talk to anybody offline. I’m happy to share my email and talk about how we created these things, but during the pandemic, it was much bigger than just one. We all came together, it was psychiatry, it was our spiritual care department, it was social work, it was nurses, it was multifaceted care, but we found people who were willing to donate their time to do a 20-minute mindfulness that just popped on. Those are easy little resources. We found that people wanted physical fitness programs, so we offered pop-up yoga-type programs.

One of the things that we didn’t talk about here, but it kept striking me as you were talking, was the practice of gratitude. That’s something that anybody can do. We could buy $10 journals. You could do it. You could get a prompt for free online and do it, but the more you practice gratitude, the more mindset that you can do that Dr. Ginsberg was talking about. I struggle with doing mindfulness meditation, even though I’ve done the certification course. I find that being gracious and showing gratitude towards other people is what works for me a little bit more. So we run 20-minute gratitude sessions where we would do a mindfulness session or we would journal about those things together, and they don’t cost anything. You could do it in person, you could do it virtually. So there’s a lot of opportunity that if someone here feels passionate about starting a monthly mindfulness session or something, happy to give ideas or tips for that, but it is fairly easy to do some of these things as long as someone has the interest and the desire to do them.

Stefanie Washburn, LBBC (00:57:46):

That’s great.

Pamela J. Ginsberg, PhD (00:57:47):

Thank you. Lisa. Mindfulness practices does not always mean meditation. I think that people get very turned off because they don’t want to sit in a lotus position for an hour and meditate. That’s fine. I mean, mindfulness is many, many things, and I think that to have practices that work for you where you are being brought into the present, where you’re understanding what your thoughts and emotions are doing to you is very valuable.

Stefanie Washburn, LBBC (00:58:15):

Absolutely. Thank you both.

Another question, and I do acknowledge absolutely the two of you have been spending so much time this entire time together talking about how we can take care of ourselves and the impact that that has on patient care. Wondering if any thoughts come to mind about what else we can do to take care of one another as colleagues in health care. That question had come through. Does anything else come to mind? Just I guess, looking out for one another?

Pamela J. Ginsberg, PhD (00:58:46):

I think it’s very easy to be competitive at work, and I think that this is really a paradigm shift to be collaborative at work and cooperative with one another and supportive of one another and to see our colleagues not as threats, but as sources of support for us. But we have to take risks in order to open ourselves up to people. And I know that that’s not always easy to do. I know that there are men and women who go into this profession, and I think that women — I work mostly with women, so it’s easy for me to talk about this — I think that women have an unbelievable resource of sisterhood and kindness among ourselves when we choose that. And I think that men have that as well. And when we introduce that as the norm — again, this is about creating norms — when we introduce that kindness, that support as the norm, even just for myself, this is my norm, this is how I choose to interact with people, then we are teaching people how to treat us. So I think that it just has to be an awareness on your part about how you are going to interact with people.

Lisa Capparella, LCSW, OSW-C, FAOSW (01:00:09):

Thank you. Great.

And one quick comment from me. Someone put in here that they have birthday cakes for the month. We do that too. Recent personal messages. And I think that, let’s just say you have an interaction that’s abnormal for you and another coworker, instead of getting defensive about it, being inquisitive about it. “Hey, is there something I could do to help support you?” It sounds like we had a little bit of a tip earlier. So I think instead of letting it boil or let a pot sit, talking to staff that, “Hey, we’ve had a lot of loss on this unit.” When I worked at Fox Chase Cancer Center, we used to do a memorial session for patients, which was so important because, Dr. Ginsberg talked about it, we’ve just faced loss so much, all the time, and if we don’t have a place to put it, it builds up.

I think memorial sessions, celebrating each other’s wedding showers, babies, things like that, being there when there’s a death in their family. So not just treating your coworker like a coworker, but getting to know them and trust them as a human. We spend so much time with them, and if you have crappy coworkers, I’m sorry, come talk to me, but mentorship. Find mentorship. It’s been so invaluable to me when there’s a tough situation where I’m being beat down by administration to make numbers or finances or something. I need somewhere to put that. I need someone to talk to and help support me. So utilizing those resources that you have that are also free, mentorship is free. Most people want to mentor somebody else.

Stefanie Washburn, LBBC (01:01:32):

Those are awesome suggestions. Thank you so much to both of you and to everybody who is in our audience, who is also sharing really, really incredible suggestions. I think what Sara and I can do is take a look at the chat suggestions and try to figure out a way to cull that and share that as well after the program, not the moment after the program, but as we also are going to post additional resources on the program page, maybe we can add a list of these suggestions that people have provided, to complement what you have both shared, Dr. Ginsberg and Lisa.

We are out of time for questions. Before we wrap up, I just wanted to ask, is there anything, Dr. Ginsberg or Lisa, you didn’t have an opportunity to share that you would like to? It is okay if you didn’t have anything else, but I just wanted to open it up.

Lisa Capparella, LCSW, OSW-C, FAOSW (01:02:16):

I think just thank you for this group being together, for chatting, I think from what I’m seeing here, this was needed. So thank you LBBC for inviting us, for letting us have this discussion, and really just sharing some of our passion points. So thank you.

Stefanie Washburn, LBBC (01:02:31):

Yeah, thank you both so much. It’s kind of funny, we were thinking of doing a different topic for this program when we started planning in the spring, and with everything that we are seeing and hearing, we decided to change gears and go to this topic instead, which I think, because of everything that you, Dr. Ginsberg and Lisa, have brought, feels like it’s been very meaningful to the people who have joined. So thank you both so very much for sharing your expertise, your insights, your personal experiences. We are so grateful.

And again, thank you to our audience for being so engaged in the discussion today. I’d like to again recognize the Centers for Disease Control and Prevention for their support of this program.

As a reminder to our audience, you’ll receive an evaluation link in just a few minutes. Please remember to complete it no later than September 26. And for those of you who request contact hours or CEs or a certificate of participation, you’ll be emailed your certificate by October 24. And we’re also, as you’ve already heard, going to send a link to you, in the next week or so, to a page on our website that has the slides, the recording, the transcript, and other resources related to this discussion.

So again, thank you for joining us today and for the care that you provide to people affected by breast cancer, take good care and enjoy the rest of your day.

InComm (01:03:45):

This concludes today’s program. You may disconnect at this time. Thank you for your participation.

Session II | Innovations in treatment and side effect management

InComm (00:00:24):

Greetings and welcome to today’s healthcare provider program brought to you by Living Beyond Breast Cancer. At this time, all participants are in a listen only mode. This webinar is being recorded. I would now like to turn the program over to your host, Stefanie Washburn.

Stefanie Washburn, LBBC (00:00:47):

Hello, everyone, and welcome to today’s healthcare provider program on new perspectives and practices in palliative care. This is the second session in our two-part series, Caring full circle: Managing your needs as you care for your patients. We’re glad that you could join us.

My name is Stefanie Washburn and I’m the manager of healthcare provider outreach at Living Beyond Breast Cancer, or LBBC. I’m pleased to serve as your moderator today in case you’re just getting to know us at LBBC. We’re a national nonprofit organization that offers trusted information and a community of support to people affected by breast cancer. This program is part of LBBC’s Young Women’s Initiative, which provides resources created for people diagnosed with breast cancer before age 45. This initiative began in 2011 when we were awarded a cooperative agreement with the Centers for Disease Control and Prevention to expand our programming.

We selected today’s topic because of its importance to the wellbeing of breast cancer patients and their loved ones. Our speaker, Dr. Kimberly Curseen, will help us understand the current landscape of palliative care.

I want to recognize that many people are affected by the hurricane today, including Dr. Curseen in her community. She’s taken some extra steps to join us today and we just really want to thank her for that. We also thank Dr. Curseen for sharing her time and insights with us today, and you’ll learn more about her shortly.

We’d like to draw your attention to several LBBC resources that we hope will be helpful. The first session in this webinar series for providers, Workplace safety and emotional health in a changing world, was held on September 12. We had a really meaningful discussion about self-care for healthcare providers. You can find the recording transcript and slides at the website that you can see on the screen.

We also have a four-part Innovation in Care series for your patients that kicked off on September 17. The two remaining sessions will cover the role of testing in breast cancer and financial and time toxicity. Patients can register at the website that you see on the screen, and you’re also welcome to join us. Please note that CEs are not available for this program.

Today’s speaker, Dr. Curseen, also gave a great presentation for patients called Empower Yourself With Palliative Care, which was recorded at our April 2024 Conference on Metastatic Breast Cancer.

You’ll receive links by email after this program so you can share the information with your patients and colleagues. This will also include a link to a healthcare provider blog about the distinctions between hospice and palliative care.

Now let’s move on to a few final details before the presentation. Today we’ll be using the chat to connect during the program. I can see that has already started, which is great. You’ll see the chat icon at the bottom of your screen. We’ll also be using the Q&A feature. Please submit questions for Dr. Curseen at any time. We ask that you frame your questions so they can be helpful to all participants. Our speakers will respond to as many questions as possible after the presentation. You can set up closed captioning by going to the button at the bottom of your screen.

We will email you a link to the evaluation after the program. Your feedback is really important to us in planning future webinars and we appreciate you taking the time to share your input.

Now, just a few words about contact hours and CEs. This activity was approved by Montana Nurses Association, an accredited approver with distinction by the American Nurses Credentialing Centers Commission on Accreditation for one contact hour. It was also approved by the National Association of Social Workers for one CE. If you have registered to receive contact hours or CEs, you’re required to participate in the entire live webinar today and to complete the evaluation by October 11. You will then be emailed your continuing ed certificate by November 8. Certificates of participation will also be available upon request for providers from other disciplines.

None of the planners or presenters for this educational activity have relevant financial relationships to disclose with ineligible companies except for the program’s nurse planner, Lori Ranallo, who has been a speaker for Myriad Genetics. All of the relevant financial relationships listed for this individual have been mitigated.

We are recording the session and will post it on the program webpage soon. We’ll notify you via email when the recording is available.

In today’s program, you’ll have the opportunity to learn from Dr. Curseen about changes in the landscape of palliative care, strategies for identifying and easing patient and caregiver distress, advocating for optimal patient care within the multidisciplinary team, evolving prolonged relationships with patients across the continuum of care, and ways to cope with patient suffering.

It’s now my pleasure to introduce our expert speaker. Dr. Kimberly Curseen is the director of supportive and palliative care outpatient services for Emory Healthcare. She’s also the director and primary provider for the Supportive Oncology Clinic. The clinic provides physical, emotional, and spiritual care for patients with cancer at any point in their disease process. The clinic also assists patients with complex decision making. Dr. Curseen served as the program developer and director of the geriatric Palliative Care Clinical Services program at the University of Arkansas from 2009 to 2014. She is board certified in internal medicine, geriatrics and palliative care. Dr. Curseen was named one of the palliative medicine inspirational leaders under 40 by the American Academy of Hospice and Palliative Medicine for 2014 to 2015. She currently sits on the board of the Georgia Hospice and Palliative Care Organization and is a co-chair of the Georgia Cancer Consortium palliative care working group. Dr. Curseen is also a member of LBBC’s Medical Advisory Board.

Welcome, Dr. Curseen, we’re happy to have you with us today. Please join us on screen to share your presentation and I’ll now turn things over to you.

Kimberly Curseen, MD (00:07:28):

Hi, thank you. Thank you so much. And as I’m sharing my presentation, I just wanted to say I really greatly appreciate the opportunity to meet with you all today.

As we mentioned, I have no relevant financial disclosures.

All of you are healthcare providers, so we won’t spend a long time, but I just wanted to remind everyone what the scope of palliative care is.

Palliative care is a specialized form of medical care focused on improving the quality of life for patients with serious illness such as metastatic breast cancer. It addresses the physical, emotional, social, and spiritual needs of patients and families and the primary goal is symptom management and providing relief from pain, emotional distress, and other burdens associated with the disease. In addition to this, we serve as an extra layer of support. We don’t replace any teams, but we support not only the patient’s families as well as the care team.

When you think about the scope of what we do, because sometimes that’s hard to pin down because that’s a very broad definition. I always like to say the definition of palliative care is almost a biblical one. We’re going to take care of you completely. But it’s really thinking about not so much of a specialty but possibly a philosophy of care. When we think about it as a philosophy of care, it makes perfect sense that we start palliative care principles and palliative care the minute you’re diagnosed with a serious illness, those principles still apply when you are going through that illness, and at the very end of life, which will happen to all of us, then these principles still apply at that moment.

Kimberly Curseen, MD (00:10:15):

And also sometimes we use a lot of different terminology. There were several studies that showed that patients were more comfortable with the term supportive versus palliative because oftentimes when they Google, if you Google palliative care, hospice comes up and that can be really, really difficult. So many of us have transferred our clinics or the names of our services to supportive care.

When you think of supportive care, we are just a slice of supportive oncology and supportive oncology is a vital collection of services that all patients with cancer needs because it follows them through the various stages of their illness.

Palliative or supportive care in advanced cancer is the standard of care. According to the ASCO guidelines, and even the updated ASCO guidelines, palliative and supportive care should be available to patients to maximize quality of life through all phases of illness. Palliative care is not equivalent to hospice, and hospice is a vehicle that delivers palliative care when a person is at the end of life. Many, many years ago the evolution of palliative care in oncology, we started out as threatening and we sort of had to fight to get a seat at the table. Then we progressed to the next phase where people were accepting and starting to think, “Hey, this possibly has value, but we’re not entirely sure. Maybe we need you, but kind of not all the time.” Now we have gotten to the phase where palliative care, supportive care, is an expectation. It’s a standard of care that all patients should receive because of how difficult the cancer journey can be.

What is our philosophy in palliative care? We focus on the symptoms. What I often explain to patients is that your oncology team is really focused on your cancer and that’s exactly what you want them to do, that’s why you came. However, all the things that affect you or make it difficult for you to go through your treatment for cancer or tolerate this time in your life, those are important too, and they require their own due. They require their own time, and that’s why I’m here.

We try to help patients clarify and support patients’ and caregivers’ goals. If palliative care is done correctly, when patients come to us, we don’t have an agenda. We do have opinions, but we don’t have an agenda. And once we have clarified the goals, whether those are goals that we agree with or not, that’s what we’re there to support, and often that’s what we’re there to advocate for and help them work through and frame. We often live in a place where evidence-based medicine fails. I always laugh, patients will come to me after they’ve seen 10 doctors and with the phrase, “Oh, they said that you would know what to do,” and I’m like, well, if all these people didn’t know. So this is when palliative medicine providers often become very creative and it’s our ability and our training to look at things holistically, the 30,000-foot view and seeing how patients are put together, which helps us not only work through the uncertainty but really brings together how we are able to manage really difficult symptoms.

Where can your patients receive palliative care services? I really want to highlight primary palliative care. I can’t see a show of hands, but I wonder if in the audience, do you think that you provide palliative care to your patients?

And I believe that if you have ever managed your patient’s pain, if you have ever sat with them a little longer, while they cried. If you figured out how to get them to their appointments when they don’t have transportation, then yes, you have practice primary palliative care, which is incredibly important, and many cancer teams do this very well. When that care outpaces, then seeing people like me in outpatient, or community-based care, where some of us are embedded in oncology teams or others have freestanding clinics, provide specialty care. Of course, many people are familiar with hospitalized palliative care, which is providing that urgent care. And then home-based palliative care provided in private homes or institutions, again brings the clinic to a patient’s home to support people who have limited abilities to travel or too sick to travel.

Kimberly Curseen, MD (00:15:15):

What do patients with metastatic breast cancer and survivors actually need from us? For real, what do they need from us? Well, I want to stop here and just set the stage and get on my soapbox for 2 minutes. No evidence of disease is one of the most ridiculous and insulting terms I have ever come across referring to patients who have had cancer or patients who are living with cancer. And I want to place that in your mind because that is incredibly important.

When you’re thinking about how your patients are suffering or your survivors are still suffering, oftentimes what do they get? Well, there’s no evidence of disease, you should move on. Well, if you have ever had a serious illness, I don’t care what it is, but particularly cancer, you will have evidence of disease for the rest of your life. Their body is a roadmap of that illness and the remnants of it.

I want to just sort of put that in your mind. When we’re communicating with patients, that’s incredibly important because the emotional support that metastatic breast cancer patients need, there’s a lot of turmoil. These patients are living in medical uncertainty, like living in the pit and the pendulum. They’re waiting always for the shoe to drop, but they’re expected to figure out how to plan for the future while that future is no longer certain. Almost every one of your patients during their journey has suffered a medical trauma.

Our team focuses on psychological support and trying to navigate and trying to make this journey easy to try to minimize that medical trauma. And a real big plug for integrating mental health professionals into palliative care teams is essential.

In our system, all cancer patients have excellent social workers. So they often wonder why they come to the palliative care team and they get another licensed clinical counselor. What that licensed clinical counselor is there to do is to attend to the mental health in addition to other things they may need.

We also have to think about, particularly for our cancer patients and our survivors, the social determinants of health. The reason why is what a patient has going on is going to affect what they’re going to be able to do. That will affect their treatment and influence their outcomes. There’s no way a young woman is going to be, or a young man is going to be, able to do a clinical trial if they’re the only person in their house that is working and if they don’t have childcare and the cancer center is located 2 hours away. That’s not realistic.

However, that creates disparities and it’s part of our job to think about those disparities and actually bring other things that you may not have been told. Like all patients do cancer distress screenings, and many people are really honest on those screenings, but I often find that people don’t always read those screenings and sometimes people don’t want to put those things down because they find it embarrassing. They think it will change the way you look at them. But in our clinic, we really break that down, and we try to think of ways and problem solve and advocate for our patients in order to bring that other piece that you really need to know in order to treat them, as well as make that connection.

And then of course, our bread and butter, we have to focus on the symptoms. That’s one of the cornerstones. Whether it’s pain, fatigue, psychological issues, all of that affects the ability not only of your metastatic breast cancer patients who are doing fairly well but of your survivors being able to enjoy the time because going through cancer treatment is tough. I don’t have to explain that to you. But if you’re miserable afterwards, then as many of my patients ask, “If I knew life would be like this, maybe I wouldn’t have made a better decision.” The whole point is to live. If the symptoms aren’t controlled, it’s going to be difficult for people to live their best life.

I want to make a run through some of the symptoms, and these are not all the symptoms, but I wanted to pick out some of the symptoms that I think are vexing and maybe have you look at it in a different way.

Kimberly Curseen, MD (00:20:07):

Cancer related fatigue, that is the hardest symptom to treat. What do we mean by that? It’s distressing, persistent, subjective sense of physical, emotional, cognitive tiredness, exhaustion, related to cancer or cancer treatment that is not proportional to the recent activity and interferes with usual functioning.

While I like that definition, there’s a lot packed in there. Basically what they’re saying to you is, “Hey, your patient is bone tired and even if their chemotherapy was a year ago, even if the treatment that they had was not particularly rough, that has no relation to the fatigue. The fact that they had cancer and they got treated for it, puts them at increased risk.”

Another thing with cancer-related fatigue, nobody can actually tell or see the symptom on you, but the prevalence is, and I love science, it ranges from 25% to 99%. It’s really hard to know what that means, but basically most of your patients at some point may develop this. So 30% to 60% report moderate to severe fatigue during therapy.

It usually improves after the first year following treatment completion. And this is something really important that we should be telling patients because what did they think? They work really hard. They get through the cancer, they ring that bell, and everything’s supposed to be fine, because that’s what they believe, but they’re still tired and they don’t understand why and their families don’t understand why. Then we say stupid things like, “Hey, you look amazing! You look so great!” But they feel miserable and they can’t go out and they can’t do the things that they thought they were going to be able to do or walk back into the life they thought they had. I always see this woman here on the couch: She looks amazing, but she’s tired.

Cancer-related fatigue is severe, persistent and it’s debilitating and it’s not caused by lack of sleep or overexertion no matter how much you rest. What I explain to patients is that it’s a fatigue of ignition. So I don’t know if anybody’s ever had an old car, but way back in the day, if your car you turn the key in, the car wouldn’t start, you could still drive it if you pushed the car ran and jumped in. What cancer related fatigue is fatigue of ignition. Once you are doing the activity, you can get through the activity. You might even enjoy yourself. You may not have the same stamina, but you can get through the activity. But the idea of even starting the activity is really hard. I have patients who sit on their couch and they see their shoes and they can’t possibly figure out how they’re going to get to put on their shoes. And as vexing as it is to us, it is vexing for the patient.

How do you treat it? Again, one of the hardest things. These are some of the nonpharmacologic treatments, and I tried to show you where the evidence is for them. Why I want to show you this is because the most effective treatments don’t require medications. However, the most effective treatments if you look here, do require money.

If you can’t afford cognitive behavioral therapy or acupuncture at $180 a pop, you can’t get to a yoga class, your environment doesn’t allow you to exercise, there’s no safe way, and you don’t have good internet, then a lot of these things you’re just not going to be able to access. I love it when patients say they have cancer-related fatigue and somebody has said to them, “Well, maybe you should just get out and exercise,” but don’t qualify that. So before you make a recommendation, always know what their life is like and what is possible because that’s going to frame your recommendations.

ASCO in 2024 brought together a group of experts who reviewed the literature and what they found was that there’s less evidence for medications for cancer-related fatigue. And so for palliative care, this broke our hearts, but they actually recommend offering stimulants things like methylphenidate, modafinil, the dietary supplements, the antidepressants like Wellbutrin because the evidence for some of it is there, but it’s not good enough or very good. And many of these in subsequent studies showed out they weren’t much better than placebo. Steroids, however, is still very much appropriate for patients who are at the end of life to help with fatigue, well-being, and appetite.

There are going to be some patients, and this was acknowledged in the ASCO updates, that do benefit from time-limited trials of these medications clinically. So that might not be the last word. It may just be that we need better research to really understand what medications are appropriate.

Kimberly Curseen, MD (00:25:52):

Now we come to the other one, insomnia. How many of your patients have insomnia? And how many of us have insomnia? The prevalence of insomnia is over 60% in palliative care patients. I’m actually surprised when somebody says they don’t have insomnia.

When we’re assessing insomnia, they’re like, “I just can’t sleep,” and then I start asking them these questions and they’re looking at me rolling their eyes like, Kim, why are you asking me all of these questions?

Well, I explain to them that, Hey, your body is smart. If something is not right, your oxygen level is going down, you’re in pain, like you roll over on something that’s painful, your body’s going to wake you up as a sign to say, “Hey, something’s wrong. You need to change your position,” or “I’m not getting enough oxygen.” Doing that physical assessment before we even think about medications or sleep hygiene is really, really important. If you’re not sleeping, why are you not sleeping? And we need to make sure there’s not a medical reason that the body’s trying to tell us that something’s wrong before we give medications to stamp it out.

We’ve got to think about the environment. Ask these questions like if you’re not sleeping, what actually are you doing when you’re not sleeping? What is it like? Psychologically, this is always a really good time to, no matter what they put on the questionnaire, dig a little bit deeper about anxiety, depression.

Like, “When you go to bed, are you able to turn your mind off? Are you ever afraid to close your eyes?” You think about patients who have metastatic disease to their lungs or maybe had lymphangitic spread and they present it with extreme shortness of breath. That is frightening. So when they close their eyes, sometimes they’re worried that they might not wake up. And then also the PTSD and the nightmares. And sometimes insomnia is our gift to them because some of the antidepressants that we use, opioids, if they have a paradoxical reaction, that Benadryl we give prior to treatment, and many other medications can interfere with your ability to sleep.

The first line is going to be behavioral therapy. I say that, and I always feel like a collective groan. So why a collective groan? Because in our country we’re socialized to, “I’ve got a problem. You’re going to give me a pill, and I’m not going to have the problem. And it’s going to be fixed real fast.” For insomnia, if there’s nothing else going on other than you just have insomnia, it’s not going to be fixed really fast. And we need to understand that and educate our patients behind it because what actually works and sustains long-term is sleep hygiene, cognitive behavioral therapy, relaxation and mindfulness, and meditation. But sometimes that’s a little bit of hard sell, and it’s hard to hold that line when they really, really want that zolpidem.

Also, it’s probably one of the best things out of the VA. They produce the CBT-i application completely free that has been shown to help patients sleep. I often tell people if I recommend that app, I’m like, “Look, veterans use that app and they like it and that helps them sleep, so if a veteran can use it, then maybe you can too, before we give medications.

Kimberly Curseen, MD (00:29:36):

Oral issues. Why I bring this up is because, when we’re treating patients, and particularly if they’re going to have a good outcome or they’re doing really, really well, we mention oral issues I think in the pamphlet that we give them, but how many people really just sit down and say, “Hey, look, this is going to make your mouth dry and this could lead to making it hard for you to taste things. You might notice some difficulty chewing.” If you have some older patients, difficulty swallowing, their voice may change. That’s really upsetting to a lot of people when the voice changes. That’s upsetting and frightening. And I circled here tooth decay, because what adds insult to injury is to go through a difficult treatment, you’re finally in a good place, either you’re living with the disease, it’s working or you no longer have to have treatment, and then 6 months to a year later, your teeth start to crumble. You go to the dentist and they tell you, “Oh yeah, your mouth has been dry. Everything that you did destroyed your teeth.” Great. One more thing because cancer and cancer treatment is the gift that keeps on giving.

What are some of the things that contribute to a dry mouth? Well, think about it. We often contribute to that dry mouth because how many of us give patients opioids, and then if we give them steroids, we give them proton pump inhibitors. Many of our patients are antidepressants. Zyprexa, everybody’s fan favorite for cancer-related nausea, antihistamines. A lot of these medicines we use for symptom management, and many of our patients are on multiple of these medications, not just one and their mouth is dry and sometimes they don’t make the connection, but we need to make the connection.

If you have somebody on all of these medications or a combination, then we don’t need to wait until their mouth is dry and they’re hoarse and they can’t swallow and we think they’re not eating because they’re depressed or their appetite’s low. We need to talk about this before. So talk about hydration, keeping the mouth moist, mucosal lubricants, and I promise I have no investment in this company or no financial relationship, but XyliMelts, this over-the-counter mucosal lubricant comes in these little wafers and they coat the mouth and they’re great to last all night. It’s my favorite thing to use because the other things are just kind of temporary. Setting them up with humidifier, sugar-free candy, things that produce spit, those medications have some other unintended side effects, so we tend to use those last.

But what’s most important is we talk about this because this actually affects so many different things. If you’re not eating, if your teeth aren’t good, it’s going to be really, really hard to keep your weight. And also thinking about the way you look. All of those things play into how our patients feel about themselves and move through treatment.

Mucositis. So we do talk to patients about mouth sores, and we’re really good at treating mouth sores. I mean, we give out magic mouthwash. We try to think and be proactive for many of our patients, but one thing I find that we may not do as well as we could is explaining the grades of mucositis. Oftentimes by the time the patient comes to you and says, “My mouth is on fire and I haven’t eaten in a week,” you’re looking at grade 3 or grade 4, and the cat is already out the bag. What I like to talk about, if I know they’re going to get a treatment that’s going to cause mouth sores, I want to see them at grade 1. I say grade 1, your mouth is going to burn a little bit, like you ate something spicy but all the time. The moment that happens, you may not see a thing. The moment that happens is where we’re going to need to intervene. That’s we’re going to start the oral rinses, the dexamethasone, working together — if they’re in radiation oncology — with our radiation oncologist. But thinking about that and introducing that and normalizing it so patients can be your partner and letting you know the symptoms.

The other thing, and I’ve often explained to patients, particularly those who don’t really like to take more medicine, they really don’t want to take pain medication. If you are grade 4, they need pain medication. Sometimes they need IV opioids or oral opioids. I’ve seen people try not to do that, but all you’re going to do is prolong and make it so that they’re not eating longer, in pain longer, demoralized longer, and possibly not able to tolerate their treatment.

Kimberly Curseen, MD (00:35:00):

Other things to remember is that they can do some things themselves. So cryotherapy or ice lollies, I tell them when you go, as your treatment, this is going to sound insane, but I want you to sit there and eat ice through. It won’t completely get rid of the mucositis, but it helps. Because cancer treatments are affecting rapidly dividing cells. So you lose your hair, you get these mouth sores. So if you cold cap your hair, I basically say you’re going to cold cap your mouth. Get your hat, get your blanket, get your fuzzy socks, and even though the infusion center has aggressive air conditioning, eat the ice.

The bane of many people’s existence is the hot flashes, the vasomotor symptoms. What can you do about that? Well, I want to just go through some of the treatments, things that you might use, things that you might not be familiar with using. Oftentimes we refer people to acupuncture. It’s better than placebo, but when they get placebo, it seems to work just as well. If you have a person who is financially distressed or even if they’re financially on the edge and they have to make some choices, I might not send them for acupuncture. If they can afford it, I’ll send them for acupuncture.

Nonhormonal medicine. Antidepressants like Effexor [venlafaxine], that could be a hard cell, but if your patient gets nervous with Effexor or their blood pressure starts rising, you can use citalopram or paroxetine. Peroxetine, Paxil, would be the last on the list because once you start Paxil, it is really hard to get off. So my go-to Celexa, citalopram, or venlafaxine, and then if that’s not working, peroxetine would be the last

Gabapentin. So I say vitamin G because we give all of our patients on that can help. Clonidine, Veozah [fezolinetant], and oxybutynin. Problems with these medications is that if you’re older, oxybutynin has anticholinergic side effects, so you may affect their ability to urinate. Clonidine can go ahead and drop their blood pressure. Gabapentin sometimes can cause sedation, confusion, and changes. You just want to be aware of that as we’re giving these medications.

Let’s talk a little bit about gabapentin. So if you give gabapentin for hot flashes, the flashes are not going to stop tomorrow. Oftentimes it’s hard to get people to stay on it. But you want to give that realistic expectation is “I’m giving you this to help with hot flashes that will occur a month from now.”

Also, looking at the new medication, which is really, really hard to get, I’m going to call it Veozah, but it reduces hot flashes by half at week 4. So remember, anything you’re taking to help with the hot flash, 4 weeks, nothing’s working right away. You want to may set that expectation. Another study showed they had about 50 fewer hot flashes after 4 weeks versus 30% of placebo. Again tricks, lifestyle changes, what are the things they can do to ride through? Oftentimes I’ll tell patients, “OK, look, you’re having hot flashes. They come at the same time every night. You go to bed, you put down a towel, you have your pajamas. Hot flash. Roll up the towel inside of the pajamas, put on your new pajamas, and then you go back to sleep.”

Stellate ganglion block. If it’s really, really bad, this is gaining more traction for uses. You may have a patient that you sent to cancer pain and they tell their cancer pain doctor about a hot flash and they were like, “Hey, we can do a nerve block.” And that makes no sense. The reason why it makes sense is that it tends to help with the vasomotor symptoms. It also is a treatment for PTSD. So more information to come, but I say don’t be afraid of a procedure.

Kimberly Curseen, MD (00:39:03):

The next thing I like to cover is total pain. If you have a patient who has a serious illness of any kind, particularly cancer, particularly if that cancer has affected their whole entire life, they have pain. And they likely have total pain. And what total pain is, is the pain that you not only experience physically, but the spiritual, the psychological, and the social all rolls up into one ball that affects your patient’s ability to not only tolerate pain, but also the perception of pain.

What do I mean by that? Oftentimes when patients have pain and I ask about their psychological symptoms, about depression, anxiety, you can see their face fall. They’re almost a little crest falling because what do they think I’m saying? They’re thinking that I’m saying this pain is in their head. So what I often show them is this diagram here. And what that diagram here is saying is that it’s a vicious cycle. Pain is in the middle and it’s like a cog. If you have physical pain, and you get deconditioned. The more deconditioned you get, the worse the pain gets. And it’s this terrible cycle. If I just break that cycle, the problem is the psychological cycle might still be turning and still generating pain. If I just fix your physical symptoms but don’t deal with the psychological symptoms, your pain’s not going to get much better. If I only treat your depression and your psychological symptoms, but I don’t deal with the fact that the physical pain of the pain generator, you’re not going to get any better. This is the reason why we have to treat both.

Social pain often comes from a loss of dignity. That’s what we mean by that. Spiritual pain. Interfering with or changes in what a person might think their purpose is, or “Why this is happening to me?”

What is the cause of pain in patients with metastatic breast cancer and survivors? Because even in palliative care, oftentimes patients will get a referral and it’ll be somebody who finished treatment in 2017. Their oncologist refers them to us for pain, and then our team looks at this and says, “Well, they haven’t had treatment since 2017.” Again that no evidence of disease. “How is this related? Maybe they just need to see pain management.”

What causes the pain? Well, thinking about the surgeries and the post-mastectomy pain and the lymphedema, we all understand that in the short term. But the problem is with post-mastectomy pain, that pain, everything can be fine and then all of a sudden a year or 2 later, you develop that terrible neuropathic pain; the lymphedema gets a little bit worse. Chemotherapy-induced neuropathy, many patients will improve, however, if they have to be on the chemotherapy indefinitely for maintenance, they’re never going to be away from the stimulus that’s causing the neuropathy. And if they have diabetes, it compounds. For some patients, even after the chemotherapy after 18 months, they may just have to live with a degree of that.

The bane of many breast cancer patients existence is the aromatase inhibitor and the joint pain. Because when we say joint pain, it sounds like, “Oh, you have a little arthritis, a little joint pain.” But imagine from your patient, they’re like, “God, I have knee pain, I’m kind of achy.” And people are like, why do you want Percocet for that? Or why can’t you just kind work through it? Imagine if you’re sitting, a lot of us sit and some people will leave this lecture and they’ll go to the bathroom and you’ll get in your car. But when you have this kind of joint pain, everything has to be planned because you go to get up and you can’t right away. You’ll get up, but you stop and you go to take that walk and that walk is going to make you feel better, but you’re going to hurt for 10 minutes of it. You want to take down the Christmas decorations, but guess what? It’s painful because your joints are painful. You can do it, but it’s a constant reminder working on your brain at all times that not only are you taking this medication, but you have this constant reminder of cancer and this constant reminder of physical limitation.

Kimberly Curseen, MD (00:44:31):

Think about radiation, post-radiation necrosis and brachial plexopathy. Incredibly painful. Sometimes the medications, I always say I laugh with patients because we’ll talk about weight or have you lost weight, and a lot of patients will say, “I gained weight.” So not only do I get cancer, but to add insult to injury, now I’ve gained weight. Who gains weight with cancer? But that weight gain can put extra stress on joints, particularly for your older patients who already have osteoarthritis and impair their ability to move, which perpetuates the pain.

And then cancer pain, pain from wounds, pain from the metastasis, even if it hasn’t grown. Because what I explain to patients is that you may not have a huge change on your scan, but if you have just a little bit of a change because we’re dealing with spaces that are in millimeters that cancer could have been not pressing on the nerve 2 weeks ago. A little inflammation, a little bit of growth, and now it is. Now you’re in pain. I say cancer doesn’t cause you pain until it presses on something that hurts. And research studies show that approximately 20% to 50% of cancer survivors have pain. Thirty percent of those cancer survivors do not receive pain medication proportional to the intensity of their pain, and pain negatively affects the cancer survivors daily functional status and quality of life. That persists for years. So not addressing this really keeps people from reentering back into their lives and moving on.

I want to talk to you a little bit about opioids. Opioids are recommended for cancer-related pain. They don’t outperform placebo, however, for patients with chronic pain. When we talk about pain, particularly in survivors, people stiffen up because they’re thinking, “Oh, are you telling me that I need to give them opioids? Are you telling me that I need to give them more medications?” Well, no. You don’t have to give them more medications. You don’t have to give them opioids, but you do have to believe them. Acknowledging that somebody’s experiencing something doesn’t obligate you or dictate how you’re going to treat that something. And even if that pain is driven psychologically doesn’t necessarily mean that they don’t experience the pain. They’re experiencing it, it’s just coming from a different place.

Now with the opioid crisis, we do have to dispel the myth that our patients don’t get addicted, that our patients don’t misuse. There have been several studies that show that if you test everybody in a large swath of cancer patients taking controlled medications, oftentimes you will find things that you shouldn’t find in there. Patients will take these medications and chemically cope.

People are like, “Oh my goodness, that’s terrible.” I said, have you ever had a really hard day and you went out and had a drink? Perfectly acceptable. I have a really hard day. It was pretty terrible. I just want to sleep. I’ll take a Percocet. Unacceptable.

When we hear that from the patient, think about how we actually do in our society promote the behaviors. But depending on what we’re using, if it’s alcohol or over-exercise, marijuana, a variety of things that are acceptable, but we stigmatize our patients when they use these medications for things that we experience ourselves. I just want us to think about that because that will affect how you approach when patients are using medications inappropriately.

These are the side effects that you know, I don’t have to go over them, about opioids, but these are the side effects that you may not know and we don’t often counsel our patients. The cardiovascular risk is equal to NSAIDs. Some of the medications prolong their QT — methadone, buprenorphine, fentanyl. Immunosuppression. There’s opioid receptors on T cells. We don’t fully understand why, but it may affect and decrease resistance to infection, particularly in vulnerable populations. Buprenorphine doesn’t seem to do this. Endocrine. This is really where the rubber meets the road. Long-term opioid use can reduce testosterone. It definitely affects our men and our women as well. Increased risk of metabolic syndrome. So now that our patients are living longer, that increased risk for high cholesterol, glucose intolerance. It can promote estrogen deficiency and osteoporosis, increased risk of fracture.

When we start these medications and it’s really hard sometimes when they’ve been on them for a long time to stop them, they often feel kind of accused. But I wonder if we really educated people, not just that you could get addicted and you could overdose and not breathe or something like that. If we told them long term what these could cause and we really gave them informed consent and we gave them a true choice, would the way we approach these medications would be different.

Kimberly Curseen, MD (00:50:30):

If you send them now to pain management clinics or palliative care clinics, many of us will recommend a medication like buprenorphine. Why are we recommending buprenorphine? Because buprenorphine has a better side effect profile. People can be on it for long, but it does come with a stigma because most people associate it with suboxone or opioid misuse disorder. But it’s actually a really fine pain medication. And if you have to be on it, I think that is a safer medicine to be on long term for people who are going to require chronic pain management.

Flipping over to what are the messages that your patients are receiving at diagnosis and what are some of the unintended harms. When we look at these pictures, patients need to be warriors. We need to be resilient, we need to be fighters. We can break down a little bit, but a strong person never gives up. But when we really think about it for our patients, what does illness actually threaten? It threatens security, confidence, stability, and well-being. And that can lead to demoralization, which is a little bit different than depression. Demoralization affects the way you see life, the way you move through life, increases risk of suicidality.

These patients are living their lives. They’re not like depression where they can’t get up and they can’t sleep, they’re eating, they look normal, but everything is seen through a negative lens and they can’t seem to move on, or they get stuck. Incredibly important to recognize this and have this treated. This is where you’ll see cognitive behavioral therapy, there’s a rise of psychedelics and things like that. And there’s more research in this area to figure out how patients can move on and live and learn to accept those symptoms.

Also, psychological therapy, which sometimes people might be resistant to. Things like acceptance and commitment therapy, helping patients understand that they have this illness and I’m accepting where I am, so how am I going to live with it. And remember, if a patient experiences PTSD, they need special PTSD counseling.

I want to be mindful of the time, and I’m so sorry, I think I am running long. But remember, complementary therapies, your patients are going to use them. Educating yourselves about them is incredibly important, and there is some evidence.

What are some of the barriers? We’ll run through these very quickly.

What patients often are concerned about is that they believe palliative care means an end to curative treatment. So educating them or providing them education or normalizing it. I say don’t wait to send them to me when the house is on fire. Introduce this concept as something normal. “Hey, we’re going to start treatment. You’re going to meet your palliative care team for your symptoms.” Helps normalize it.

Healthcare providers sometimes are still worried, less so, but still worried that we might interfere, take away hope. So learning about it, being able to explain to maybe your colleagues why this is important, and embedding palliative care within oncology clinics actually incredibly helpful. It saves patients having to go to different places to get this care, but it really allows your palliative care provider to understand the illness.

When we think about health disparities, of course there’s significant disparities that exist for patients with minoritized backgrounds. I don’t have to say it as something that is, but targeted approaches or really thinking about strategies that are culturally appropriate, that are focused, can really be helpful. We need to advocate. We need to advocate for policies, things within our institutions that ensure that patients receive adequate care.

And remember about only 25% of metastatic patients actually get this care.

I want to leave you with a call to action in the last minute I have here. Access to high quality palliative care delivered by a professional team for advanced cancer is standard. If we don’t provide this, we’re not providing standard of care.

Primary palliative care delivered by oncology teams are essential, essential being knowing how to do this and naming what you’re doing. Patients asking for palliative care doesn’t mean they’re giving up. They’re just asking for tools they need to make it through their journey.

We as healthcare providers should fight just as hard for our patient’s quality of life as we fight for access to treatment and for cure because there’s no point in doing all of this if the rest of your life is miserable and you regret. And no evidence of disease is a ridiculous statement. The cancer is not over when the scans are cleared. For those patients, a whole other a journey awaits. They climb one mountain just to look at another.

I’m going to go ahead and stop here. I just wanted to thank my institutions that support me and also thank this organization, and I will stop.

Stefanie Washburn, LBBC (00:56:27):

You were amazing. Thank you so much, Dr. Curseen. You shared so much valuable information on so many points and I really appreciate you covering also barriers to access and the calls to action. I think that’ll be really helpful for our audience.

We have to a couple more minutes, which is completely fine. We did get some great questions. So if you wouldn’t mind, I’d love to just pose one or two to you before we wrap up in a couple minutes.

Thank you to our audience for being really engaged and for submitting some questions.

I think this is a good one. It may be the only one we have time for, but I think it’s really important because it probably resonates with more than just the person who submitted this. They said, “I’m an oncology social worker. Occasionally I’ve suggested palliative care to a patient’s primary oncologist, but I’ve received pushback because they are associating palliative care with hospice more than symptom management, and they’re sometimes resistant to writing the palliative care order. Can a cancer patient refer themselves for an initial palliative care eval, independent of their oncologist referral?” So I thought you might be able to comment on that.

Kimberly Curseen, MD (00:57:28):

Yes, they can. And the way we have actually been accepted and integrated is because patients asked.

So you asking and sometimes trying to bend the oncologist’s ear is difficult, but it’s difficult for them to say no when the patient asks. And I also give the patient words to say. When you ask for the palliative care consult, say, “Doctor, I need a palliative care consult. I’m not giving up, and I really want to continue with treatment. I just need more support for this journey. I’m not ready for hospice, but I need more help.”

What you’re doing is then allaying the fear because that’s what they fear. Also, embedding in palliative care and being supportive of having clinics embedded, actually get rid of some of that stigma. When I first got to my area, to my cancer center, it was not a welcoming environment. However, when they got to know me, and I started to understand what their hopes and dreams were and understand them as people and understand their practice, then I became accepted. And I actually sit on their executive council now.

Stefanie Washburn, LBBC (00:58:54):

Oh wow.

Kimberly Curseen, MD (00:58:54):

That only happened because of relationships.

Stefanie Washburn, LBBC (00:59:01):

Great. Thank you so much for sharing your insights with that. And you actually, in doing so, addressed another audience question that had come in. So that was perfect. And it sounds like it’s relationships, it’s process, it’s time. These changes often do not happen overnight.

I also just wanted to mention that in the chat and in the Q&A, we saw that your comments about no evidence of disease really resonated with a lot of the people today. So thank you for bringing that up. I think that’s really, really important.

Kimberly Curseen, MD (00:59:30):

Yes, and thank you. Yeah, I want to kill that term dead.

Stefanie Washburn, LBBC (00:59:36):

I remember you mentioning it in the presentation that you did at our metastatic breast cancer conference in the spring as well. So I was happy to hear you talk about it again today with our healthcare providers.

At this point, that’s all the time that we have for questions. So on behalf of Living Beyond Breast Cancer, Dr. Curseen, I want to thank you deeply for sharing of yourself, of your experience, your expertise today, especially in a trying time in the weather and in the community where you live. Thank you again. You have been wonderful, and I know this has been really, really valuable to our audience.

Thank you again to our audience, and I wanted to recognize the Centers for Disease Control and Prevention for their support of this program. So thank you everybody for joining us today and for the care that you provide to people affected by breast cancer. We hope you take care. Have a good rest of your day and a good weekend, and stay safe out there. Bye-Bye, everybody. Thank you again.

InComm (01:00:28):

This concludes today’s program You may disconnect at this time. Thank you for your participation.