Palliative care for breast cancer with Kimberly A. Curseen, MD

Palliative care is a helpful, but often misunderstood and underutilized part of breast cancer care. Though palliative care can help improve quality of life for people with any stage of breast cancer, it is often mistaken for hospice, or end-of-life care.

Living Beyond Breast Cancer CEO Jean A. Sachs, MSS, MLSP, spoke with Kimberly A. Curseen, MD, director of supportive and palliative care outpatient services at Emory Healthcare. Dr. Curseen explains the difference between palliative care and hospice and what adding palliative care can do to help with symptoms, side effects, and your experience. She also describes the different ways healthcare centers provide palliative care and how to speak to your team to access that support.

Jean A. Sachs, MSS, MLSP

Hi, everyone. It's Jean Sachs. I am the CEO of Living Beyond Breast Cancer, and I hope you're all staying safe and doing well today. In honor of National Hospice and Palliative Care Month, we are going to talk about the role of palliative care when you're diagnosed with breast cancer. We know there is a lot of misunderstanding about what palliative care is, how you access it, and what the difference is between palliative care and hospice. So we have a wonderful expert with us today who is going to help clarify these important issues.

I am so pleased to introduce Dr. Kimberly Curseen. She's the director of supportive and palliative care outpatient services at Emory's Winship Cancer Institute in Atlanta, Georgia. If you'd like to read her entire bio, please go to lbbc.org, but for now, welcome, Dr. Curseen, and thank you so much for joining us today.

Kimberly A. Curseen, MD

Thank you for having me.

Jean A. Sachs, MSS, MLSP

We hope you're doing well. I know it's busy, right?

Kimberly A. Curseen, MD

Yeah, just a little, just a little busy.

Jean A. Sachs, MSS, MLSP

So, let's just start with the very basics. As I said in my opening, often people confuse palliative care with hospice care. Can you start with giving a definition for both and explaining the differences?

Kimberly A. Curseen, MD

Absolutely. All palliative care is, is the profession that provides an extra layer of support for patients with serious or life-threatening illness, no matter where they are in their illness: whether they are at the beginning stages, whether they will live with an illness chronically, or whether an illness will take their lives. Palliative and supportive care, they work with the patient's doctors, as well as other professionals to help patients live the best quality of life possible.

Hospice is actually basically an insurance benefit. And what hospice does, is it helps provide the medical care that is needed and the palliative care that is needed for someone who is approaching the end of life. Again, to help them live the best quality of life by providing services such as nursing home, CNA support, medication support, equipment support, all that and spiritual and emotional support that you need at that time. So basically what I say is that all hospice is palliative care, but not all palliative care is hospice.

Jean A. Sachs, MSS, MLSP

I love the way you say that. And I also love that you say it is supportive along with everything else that you're doing, that this really, really helps. What healthcare professionals would typically be on a palliative care team?

Kimberly A. Curseen, MD

Depending upon where you're accessing your palliative care, like typically in an outpatient clinic, if you were to receive a referral, you would likely see a medical provider, either an advanced practice provider or a physician, a licensed clinical counselor or social worker, spiritual health clinician, and sometimes other providers such as volunteers, depending upon the program, a therapist that you will meet to help you along your cancer journey.

Jean A. Sachs, MSS, MLSP

Since Living Beyond Breast Cancer has a very national audience and obviously serves women who live in more rural communities, is this something that is always available regardless of where you're being treated for your cancer?

Kimberly A. Curseen, MD

I wish that were the case, but to varying degrees. Here in Atlanta, we have three major health systems, and two of them have active outpatient palliative care programs. However, almost all hospitals in Georgia do have palliative care inpatient programs that help patients with symptom management when they come into the hospital, when you're not feeling well. I think there's a growing number of outpatient community providers that also provide in-home palliative care to try to fill this need. In our rural communities we find that those providers, and sometimes those providers are connected with hospice agencies, but they're not providing hospice. They're actually providing in-home palliative care to help patients with symptom management. And while they're going through active therapy and usually are focused on trying to keep patients tolerating active therapy that may be working for them, but otherwise causing unintended consequences.

And I don't want to diminish the type of palliative care we call primary palliative care that outpatient and colleges are already doing.  So many oncology teams … very tight teams and they have social workers, nutritionists, therapists, rehabilitation therapists, that all serve to help with your cancer journey. And they are actually providing primary palliative care at the time. And that's a huge amount, and there's a lot of work. So I don't want to diminish that work in any way if you're not able to access a specialty clinic.

Jean A. Sachs, MSS, MLSP

That's really helpful. So, patients should certainly ask their doctors and find out what is available.

Kimberly A. Curseen, MD

Absolutely.

Jean A. Sachs, MSS, MLSP

So, give us some sense of how someone who's being treated for breast cancer could benefit from palliative care and maybe break it up between someone with early-stage breast cancer and someone living with metastatic breast cancer.

Kimberly A. Curseen, MD

That's an excellent question. I think we often see patients who have early breast cancer for emotional support and they rely heavily on our licensed clinical counselors and our spiritual health clinicians, just to sort of understand what's going on. They meet with us and we talk, if they're going to undergo a certain kind of therapy, about what those potential side effects are. Many patients are concerned whether or not they will be able to tolerate them, so we want to reassure that you can, with good symptom management that will help you through it. We also serve as the sounding board and try to anticipate what other social or barriers they might achieve to healthcare. Sometimes we fall into the patient navigator role, depending on how deep their oncology program is, we try to do whatever we can to support.

For somebody with metastatic breast cancer, depending on their journey, that can get sort of tiresome. Often they're having to switch therapies. And again, focusing on symptom management, being supportive and helping them as they're trying to decide about clinical trials or what to do. We are helpful in that place to be a safe space for them to talk through their concerns so that when they go to their oncologist, they have a list of questions to make sure. Sometimes we serve as liaison to ask questions for them. We continue to deeply and help manage symptoms.

And for patients when cancer directed therapy is no longer appropriate, or they decide that that's not going to reach their goals, we help with that transition as well, as well as make ourselves available to their families. Often our counselors working with children and helping parents have language about how to talk to children about how the life is changing and what kind of words to use. So we provide guidance there.

Jean A. Sachs, MSS, MLSP

It's so helpful. It's such important work. For the metastatic population, do you think palliative care should be brought in right away, as soon as they're diagnosed? And if so, does that typically happen?

Kimberly A. Curseen, MD

It does not typically happen, but yes. When you're in crisis, and you bring somebody in in the middle of a crisis, now you're having to develop a trusting relationship and a rapport. And for some patients that can be scary and sometimes burdensome. They're usually happy that they did it, but it's sometimes hard to conceive of adding one more thing. When we're brought in in the beginning, that allows us to develop a rapport and a trusting relationship where we're able to talk about what's important to you, what your goals are. We get to know you, and it allows us to provide symptom management and options that are more tailored to you outside of a crisis. And then when the crisis happens, sometimes it's three o'clock in the morning, you know who to call. I find that's the best thing. The people that know, and we've been taking care of a long time, they know the drill. I don't feel well, I'll call my oncologist. I'm going to call Kim. She's going to smooth the way at the ER for me, her team's going to pick me up in there. And it takes away the stress of certain things. We also help people make plans because we have to be realistic. We help try to figure out what are the things that we need to have in place that also relieves stress.

Jean A. Sachs, MSS, MLSP

Yeah, that's so helpful. I know sometimes it's hard, even if the patient can accept that they need palliative care, to get their family and their loved ones to understand, as you said in the beginning, the difference between palliative care and hospice. It's great that you're working with the entire family.

I know there has been some research that actually show the benefit of having palliative care. I thought maybe you could tell us a little bit about that.

Kimberly A. Curseen, MD

Right, there was a groundbreaking study, the Temel study, which looked at metastatic lung cancer and found that patients who had early integrated palliative care for advanced lung cancer had better quality of life scores, less anxiety, depression, less use of aggressive interventions that they wouldn't have wanted at the end of their lives. But it also showed that it was possibly a life-prolonging benefit. And there've been other studies that have sort of tracked out specifically for breast cancer. In 2019, there was a nurse-led palliative care intervention, and that showed improved quality of life for patients with metastatic breast cancer and better symptom control. And, this just came out recently, there was a 2013 international consensus looking at women from all over the world. And it reaffirmed that having integrated palliative care early into treatment actually shows improved quality of life. So it seems that attention to symptom management, proper support, that if you have advanced cancer, no matter what cancer you have, having access to high quality palliative care can be a benefit.

Jean A. Sachs, MSS, MLSP

It is great to have a team that's really focused on your quality of life. As we know many doctors, all with good intentions, often wreak havoc on a patient's quality of life. But the role of this is to really focus on good quality and making the road easier. You addressed the misconceptions between hospice and palliative care, but is there anything that you think an organization like Living Beyond Breast Cancer could be doing to just help our community better understand the value of palliative care?

Kimberly A. Curseen, MD

I think what I would ask any organization to do, that has a large platform, is spend some time empowering members often to ask for palliative care. In our institution, if a patient has asked for it, I've never had a provider be against it. They always think, “Oh yeah, that is a good idea.” And remember that when you're going to your specialist or your oncologist, they're really focused on helping manage your cancer and they want you to have the best quality of life possible. And sometimes the days are moving so fast they may not realize that you're needing this extra support. Bringing that up to them won't be offensive, it doesn't take away from their care. The team is really there to help them do the best job that they can actually do, in addition to helping you.

But I find that sometimes we bring in palliative care not as in something that's normative. But this is just something that you should expect. If you go to a cancer center, there's certain things you expect. You should expect to have your symptoms managed, you should expect treatment plans that you can tolerate. You should expect that wrap-around interprofessional care, if they have access to it. The other thing I think is really important is that when we think about hospice, not thinking of hospice in the terms of things that have been taken away. I often express to patients that it's there because this is our way of saying we're never going to leave you, no matter what, that it's your safety net in our country. You can do whatever you want. You can try anything and no matter what happens, there's a net under you that will take care of you. This gets you your control back, right? It's there to add to your life, not to take away.

Jean A. Sachs, MSS, MLSP

Right. And I think it can be a really valued member of your team. I've seen that time and time again, patients saying it's such a relief to have a palliative care doctor on my team now and collaborating with my oncologist, my radiation oncologist, whoever is there. I just want to thank you so much for what you do. I am sure it is a very emotionally challenging job, but  I'm sure also very rewarding, where you get to connect with people at such an intense moment of their life. We appreciate that.

Kimberly A. Curseen, MD

It's the best job in the world. I get to see people be so brave and so amazing and I help them accomplish what their goals are. I see them get well when they didn't think they would, and then even after they reach wellness, we help them reintegrate back into their lives. And that's a really beautiful thing. I think that's one of the most rewarding things, and people don't realize about palliative care that we see a lot of people do.

Jean A. Sachs, MSS, MLSP

I think you also play such an important role for the caregivers, who are not the patients, but are under tremendous stress. I know you're a real partner with them. That's an important piece of it all as well.

I want to thank you so much for sharing some time with us on this Friday afternoon, Dr. Curseen. You're an incredibly compassionate doctor and we appreciate you.

Kimberly A. Curseen, MD

You're welcome.

Jean A. Sachs, MSS, MLSP

Thank you. And then just to keep the conversation going for everybody watching, remember you can go to lbbc.org. We have a lot of resources on palliative care. We also have closed Facebook pages where you can connect directly in real time with other women who are facing similar circumstances. Please stay in touch with us. And as I said at the beginning, stay safe, stay well, we're all in this together. Thank you.

Kimberly A. Curseen, MD

Thank you.