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Oncology Social Workers Help MPN Patients

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Published on May 22, 2020

Key Takeaways

How can an oncology social worker help you? What resources can they connect you with?

In this segment from our recent virtual town meeting, Robin Katz from Robert H. Lurie Comprehensive Cancer Center talks to host and MPN patient Andrew Schorr about what she does as a social worker and why it matters for patients. Topics include stress management, communication tips, asking for help and more.

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power in partnership with Bag It, MPN Advocacy & Education International and the MPN Research Foundation. Patient Power is solely responsible for program content.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

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Transcript | Oncology Social Workers Help MPN Patients

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:
Now let's get up close and personal with Robin Katz who's an oncology social worker.

Thank you for joining us from Chicago. So we have anxiety with, so first you're diagnosed with something you've never heard of. So when somebody says ET essential thrombocythemia, polycythemia vera, myelofibrosis, can't even spell it.

Robin Katz:
Correct.

Andrew Schorr:
Don't know anybody with it. And you're saying, "Oh, my God, what is it?" And also, there was a debate for a long time, not recently, long time. Was it even a cancer? Was it a blood disorder? Then it was classified as a cancer, you say, "Oh, my God, I’ve got a cancer I've never heard of." So how do you help people, the patient and the family member, the loved one say, get past that terror, if you will.

Robin Katz:
We go over it multiple times, because patients still don't understand the terms, and it's hard for them to wrap their head around having cancer. And they ask the same questions we heard earlier, "Is this cancer? How did I get cancer? Did I catch it?" So we go through all those questions over and over. And then we discuss that this is a disease that's a chronic illness, and if you think about it as something like a diabetes that people live with for a long time and it's managed well, we can hopefully manage this the same way.

So we give them an analogy for them to latch onto so that they could understand it a little bit better. And then, of course, we go through their emotions and talk to them about what they're feeling, and obviously other issues come up with finances, transportation, the concrete needs that they're flooded with questions about, and that adds to their anxiety.

Andrew Schorr:
You're at a major cancer center. Often there is someone in your role, an oncology social worker. So how do you ask for help starting right at the clinic hospital level?

Robin Katz:
Patients get a distress screener, through their “MyChart” or through a personal contact with a MA, a medical assistant. And they go through it, and they ask questions about anxiety, depression, transportation, and those trigger a social work contact or psychology contact. We also meet them through the nurses are really fantastic when they're in infusion, I'll get paged and they'll say, "This patient probably could use a moment to talk to you about something's going on. She's crying.” Or, “He's expressing he doesn't have enough money for food." And then, of course, the doctors will often contact me to say, “You need to see this guy, he needs a little help, emotional support. He won't tell me, but I could tell.” So that's how we meet the patients.

Andrew Schorr:
Oncology social workers are available to help.

Robin Katz:
Yes. And we also help care partners. I often talk to couples about this. You really have to be honest with each other, and you can always start the conversation with, “I'm just being honest. I'm just venting. This sucks.” Oh, I'm sorry, pardon me. Or, “This isn't easy for me, and I don't want to upset you,” but you really have to be honest, because a care partner will burn out, and then it becomes very difficult to have that communication. And that's when the communication breaks, and the two people stop talking to each other, nobody wants that to happen, because usually there's a love bond there, and you don't want that bond to break. Communication's important, and if it's okay to get upset and frustrated and angry. Those are emotions, everybody has them.

Andrew Schorr:
That's important. All right, let's talk about financial resources. As we speak today in America, we have more than 30 million people applying for unemployment. And their financial wherewithal, their health insurance, I know it varies by country, but in the U.S. certainly a very clear and present concern. Can you help? So are there assistance programs, and can the oncology social worker help someone get to navigating that?

Robin Katz:
So, yes. So at Northwestern, I can only speak for my institution. So if someone does not have insurance, we have financial assistance through the hospital, there's a process obviously. And then for those medications that are given to the patient while in the hospital, either infusion or at appointments, those are covered through the financial assistance program. If it's a medication that's prescribed, like an oral medication, those are not. So we often, myself and the advanced practice nurses look for pharmaceutical companies that will assist with those medications, and they’re income-tested.

Now, with what's going on with unemployment and people losing their jobs, and then ultimately they're not all going back to work. They're going to lose their health insurance. I don't know what's going to happen. I think some of the pharmaceutical companies have stepped up. I know Bristol Myers Squibb has and a couple of others that will kind of open up the doorway right now to make sure patients are getting their medicines who are already enrolled. Not sure what's going to happen in the future. So that's a big question mark, and it's causing a lot of anxiety quite honestly.

Andrew Schorr:
We're going to talk more about that. Just want to mention just last week on Patient Power, we did do a program with the Patient Advocate Network Foundation, which helps with support, particularly for people in the U.S. on Medicare and assistance there and also a window into other organizations, The Leukemia & Lymphoma Society and others that are helping. And also as you alluded to, sometimes even free drug programs from the pharmaceutical companies and these programs are being liberalized particularly now.

So we're in a particularly uncertain time, but with these MPNs, there's uncertainty about the future. So, Robin, how do you talk to people about, I don't know if you say live for today, but how do you help people not stress out about first seeing the glass half-empty and seeing black clouds only in the future?

Robin Katz:
So while cancer is dire, you can live a long productive life. It is a chronic illness. So patients, I often say, you have to look at it as if you're a skier, you don't look at the bottom of the mountain and become so frightened and paralyzed, you look three feet ahead of you. You just ski those three feet.

So try to find meaningful moments that you can preserve and remember. And it could be anything, it could be 30 seconds. It could be that butterfly that flew by your window that you weren't expecting because you live on the 21st floor, or it could be coffee with a friend that you hadn't seen for years over FaceTime now. But there will be speed bumps. You will take five steps back, and you'll be disappointed. And you have to kind of live with those emotions because if you squash them down, that's where the stress comes, and the anxiety and then the anger.

So it's a process. There's no magic wand that takes it away, and you're going to be successful and never be stressed again. Because as you know, Andrew, there's always scan anxiety and cancerversaries, it's annual.

Andrew Schorr:
Now we've talked over the years about the mind-body connection, and we're getting questions exactly about this. People say, "Well, is stress going to change my blood counts? I'll have too many platelets or too many red cells or more scarring in the bone marrow.” What about that? Or just stressed generally related to our quality of life as we live with a condition.

Robin Katz:
Stress and sugar do not elevate your cancer. So. but stress takes a toll on your emotional well-being as well as your physical well-being. So we introduce things like mindfulness techniques, deep breathing. I recommend, especially now I know we're not going to talk about COVID-19 in-depth, but especially now patients are looking for things that are not social media, that are giving them anxiety-provoking issues about social distancing.
So there are great options on YouTube for relaxation techniques, yoga, creative journaling, and those can bring down your stress level. So we often talk about those techniques and those options with patients.

Andrew Schorr:
One last thing I want to cover with you is about asking for help. So communication with people who can help you, whether it's a spouse, whether it's another family member, whether your next door neighbor in an apartment in Chicago or New York or Los Angeles, talk about that a little bit, about not feeling shame to ask for help

Robin Katz:
This is an area I love to talk about, and it's a little difficult now because of COVID-19, but in the past patients would say to me, "I don't want to ask. I don't want bother anyone. They're busy, they have their lives, they're working." I'm like, "Okay, if you are an older person, you have children and they live nearby, you birthed them, you raised them, you fed them, you sent them to school, bother them, call them. You need help with your laundry? Have them come over. If you're a young adult and you have children and your parents live nearby, call them, ask them to come over and help you make dinner.” You don't need to sit there and watch them do something, maybe you can do something with them.

But I think that asking for help is hard. We're a very independent society, but people really do want to help. The other thing is, if you ask people... If they ask you for something that you want, like, "Can I help you?" And you kind of hesitate and say, "I don't know. Yeah, whatever you want." You're going to end up with 12 lasagnas in your freezer. So tell them what you want.

Andrew Schorr:
There are websites—I know one I think is called Lotsa Helping Hands or various organizations to help triage that so that somebody can help you. Now there are people, often younger people who are willing to go get your groceries for you. 

Robin Katz:
That's right.  There's a great app called Ianacare, I-A-N-A care, and they'll coordinate by a schedule. Like you're saying, Lotsa Helping Hands.  

Andrew Schorr:
So ask for help, folks, both at the clinic level, is there a Robin Katz who can come talk to you or your loved one, family member, on the phone, telemedicine, in-person, whatever? Are there these apps and resources to help the community help you? Whether it's people from your church or synagogue or mosque or people in your building or neighbors down the street where you can get help.

Thank you, Robin, for that great information you’ve shared with our community. I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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