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Tough Talks With Your Doctor

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Published on February 18, 2020

Key Takeaways

Whether it’s an end-of-life conversation or one about how expensive treatment can be, doctors and patients need to be ready to make time for tough talks together. Patient advocate Susan Rafte shares takeaways from a presentation on the difficult conversations that patients should have with their doctors. Watch as she discusses factors that play into those important moments, including financial issues in treatment decisions and talking about what end of life may look like for you as a patient—even when that situation isn't on your immediate horizon.

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Transcript | Tough Talks With Your Doctor

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.

Andrea Hutton:         

Hello, I’m Andrea Hutton from Patient Power, and I’m here at the largest breast cancer symposium in the world. Today I’m with Susan Rafte, who is a survivor of metastatic breast cancer for 23 years and also an avid patient advocate. Thank you for joining us today, Susan.

Susan Rafte:            

Thanks for inviting me. I’m glad to be here. 

Andrea Hutton:         

I attended a session where you were the moderator and, in that session, there were doctors and patient advocates, and the conversation was about difficult conversations that doctors have with their patients and actually even the difficult life of being a doctor. Do you have any thoughts about what the takeaways are for patients?

Susan Rafte:            

It started with Rachel Greenup from Duke giving a talk about financial toxicities, how patients make their decision based on their economic situation, and that’s a scary place to be when you’re choosing how you’re going to treat such a very scary disease based on what you can afford. So, that presentation was really interesting and well-received.

Andrea Hutton:            

The majority of the people in the room are doctors, so this is an interesting conversation for doctors to be hearing as well, that their patients may be making some of those decisions about their health, but on financial terms, that they’re not used to having that conversation with their doctor. 

Susan Rafte:            

Exactly. It’s a fine line that physicians have to walk, because there’s an ethical problem in what can be said to a patient or what a doctor would choose to offer to a patient based on financial situation. So, it’s really an interesting line that I think the physician has to be aware of and account for, and are patients not being compliant not because they’re bad patients and not because they don’t want to be treated, but as one of the advocates pointed out, it’s a difference of putting food on the table or going and getting treatment. 

I think that is a hard discussion to have. The doctors have a keep a distance from their patients. Doctors can’t be your best friend. They’re your treating physicians, so they can’t know all of those intricate details about your life, and yet they kind of need to know some of those. So, that was a very interesting conversation.

The second one then segued into Eric Winer giving a presentation about end of life, and I think that is the elephant in the room so often that sits there. For many physicians, it sits and sits, and it doesn’t get talked about, and it gets talked about far too late into the game for our metastatic patients. I think that the advocate, Thelma Brown, she gave a great description of the tale of two sisters. She has lost two sisters to breast cancer, and one had a physician that came early on and said, “This is basically what you have left as far as what your life is going to be ,” and they embraced that as a family. She went on and she lived, as she said she lived until she died.

The other sister had a doctor that kind of hemmed and hawed around the conversation. It wasn’t clear, and there was no clarity for her sister, and it was a really brutal end of life for her sister. So, in her own family, she had that comparison. Eric brought up and had good data to look at about patients and to have that conversation and when and the earlier that you’re communicating with your patient and building that relationship, I think the pressure—it’s always a hard conversation, especially when that day comes and you have to say there's nothing more. 

Andrea Hutton:            

But the elephant is always in the room. I’m a breast cancer patient myself and, from the minute they say the word cancer, that’s it. It’s always on your mind. 

Susan Rafte:            

Exactly. From the day you have cancer and then if you do become metastatic, I became metastatic very quickly and years ago, and so that metastatic population wasn’t as prevalent, as obvious as it is now, and there wasn’t such great support that’s out there and camaraderie. I don’t want to say I stuck my head in the sand, but I didn’t know all the facts. I didn’t realize that theoretically, I had a 3- to 5-year life sentence when I was told I was metastatic. 

I, obviously, have become an outlier or a miracle or whatever you want to call it, but I think it’s interesting to know now that women and men that are being told that they have stage IV cancer, they are learning the statistics, and they’re pretty harsh. So, the news is not good and yet, to be able to know that and work with your physician and the team, I think it doesn’t always fall solely on the shoulders of the physician. There are teams that really help our patients, and it’s an ongoing communication that has to happen so when that day comes, there’s been a build-up. You’re never ready for those words, but it does help in having that conversation for both parties. 

Andrea Hutton:         

One of the things that struck me, one of the conversations was about seeing your doctor as human and also understanding that the difficult conversation for them to have with you about end of life, it affects them, especially if you have a long-term relationship with your doctor. 

Susan Rafte:            

Absolutely. 

Andrea Hutton:            

It’s hard for them to have that conversation. I don’t think as a patient I ever think about how hard it might be for my doctor to be talking to me. I only think about it the other way around.

Susan Rafte:            

Exactly. Going back to Eric Winer’s presentation, I think he looked at the cup half-full and said, “We have a special job in this world on oncology, that we get to really help people get to that point in a very healthy way and help them through that door. It’s a very special job to have that in your career. It’s hard, but it’s got to be really meaningful.”

Andrea Hutton:         

Well, thank you for bringing the patient voice into these conferences.

Susan Rafte:            

Well, trying and continue to try. 

Andrea Hutton:         

Thank you for being here today.

Susan Rafte:            

Thanks for having me.

Andrea Hutton:         

We appreciate you bringing knowledge and hope to our patient community. 

Susan Rafte:            

Thanks.

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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