Black and in pain: getting care for breast cancer side effects, with Pat Washington, RN, PhD, OCN

In this video, oncology nurse Pat Washington, RN, PhD, OCN, talks with breast cancer advocate Tiah Tomlin about the beliefs and barriers that keep Black people from getting good pain care. Dr. Pat explores how fatalism – the idea that death from cancer is inevitable – contributes to beliefs that pain during breast cancer treatment is expected. She offers tips to effectively communicate with doctors who dismiss, ignore, or overlook your pain concerns, as well as evidence-based guidance directly to healthcare professionals to help them better serve Black patients.

Transcript

Tiah Tomlin (00:01): 

Hello. I am Tiah Tomlin, breast cancer survivor, an alumna of LBBC's Young Advocate program, and the Knowledge Is Power program consultant for the Black Breast Cancer Symposium. Today, we're going to be talking about health disparities in managing treatment side effects. Specifically, we're going to focus on managing pain. Joining us today is Dr. Patricia Washington. Dr. Washington has been an oncology nurse for over 35 years, receiving her PhD in nursing from the University of Texas Houston Health Science Center, and [she completed] post-doctoral study at M.D. Anderson Cancer Center’s Department of Symptom Management Research in Houston, Texas. Currently Dr. Pat serves as the Gulf Coast Clinical Nurse Educator for Puma Biotechnology. Pain and managing pain is a difficult issue for people to discuss with their doctors for a variety of reasons. It's also well-documented in the research literature, as well as from reports of women themselves, that women, Black women, and BIPOC women do not have their pain appropriately addressed.

As recently as last October, a study published in the Journal of Practical Pain Management found that BIPOC people with metastatic cancers were far less likely to receive adequate pain management meds compared to their white counterparts. We recognize that our institutions and providers need to address health disparities. And as we work towards that, we also want to provide you with strategies and information to help empower you to get effective care and avoid more suffering. Dr. Washington is here today to help us and help you. With that, welcome, Dr. Washington. And thank you so much for joining us. 

Pat Washington, RN, PhD, OCN (01:52): 

Thank you for having me today. I appreciate that.

Tiah Tomlin (01:56): 

Awesome. Dr. Washington, as I stated in the introduction, this is not a new topic. What are some of the reasons BIPOC breast cancer patients do not receive adequate care for their pain?

Pat Washington, RN, PhD, OCN (02:08): 

Well, there are various barriers to optimal cancer pain management in terms of how they might impede cancer pain treatment. And they include things like inadequate pain assessment, the patient's reluctance to report pain and inadequate knowledge of the staff regarding pain management. There's a reluctance also in this population to take opiates, which we know oftentimes are prescribed to help to manage cancer pain. There also may be a lack of staff time to attend to the patient's pain. And one of the studies pointed out that there can be quite a bit of paperwork that goes along with prescribing these opioids or just pain medicine in general, for patients. Other barriers include lack of access to a wide range of analgesics and excessive state regulation for prescribing analgesics. You see that in the news now quite a bit.

And so those state regulations can be a big barrier to prescribing these analgesics for patients with cancer pain. And the final thing that comes up in the literature is the lack of access to professionals who practice specialized methods. Now, one thing that I would like for you to keep in mind is that the prescribing of analgesics may be directly or indirectly related to the patient's negotiation of pain treatment with their healthcare provider. So basically the manner in which the patient negotiates may depend upon various factors. And so some of those factors include the patient's past experience with pain relief, any side effects that they may have experienced in the past, and fears related to analgesic use. Oftentimes, especially with elderly breast cancer patients, or cancer patients in general, they think about becoming addicted to their pain medicine. That’s a big concern.

And then finally you have to also consider individual and cultural preferences for analgesics. And a lot of times, when I was working as a nurse, patients with cancer pain often relied upon home remedies to control their pain, but oftentimes they were not effective. Those are just some of the things to keep in mind when I'm working with this particular patient population.   

Tiah Tomlin:  

Thank you. Now, what would you say are some of the barriers they face in treating pain?

 Pat Washington, RN, PhD, OCN: 

You know, many African Americans or people of color have concerns about possibly becoming addicted to their pain medications, particularly the opioids. And along with that, there is also a concern about developing a tolerance, which will lead to the need for additional medications. And these opioids do not come without side effects.

Pat Washington, RN, PhD, OCN (05:24): 

One of the biggest things that patients would say to me would be, “I don't want to become addicted,” or if they had tried them, they'll say, “Well, this constipation that comes with the use of this medication, I just can't tolerate it.” So, you really have to consider that. One thing to keep in mind is that these patients, especially older patients, tend to be very stoic in their nature and may not even report their true pain experience. And, one thing that I did find is that oftentimes, these individuals would equate pain with a worsening of their disease. So , “Oh, I'm having pain and the end is near,” so there is that correlation with pain. So, oftentimes, they don't even mention it because sometimes they're afraid that if they're on therapy, they may not receive the therapy. In other words, they, they feel like the physician may give up on them and they may have to go to hospice, things like that. So, it's really, important to keep that in mind.

And also remember that in this particular population pain is often an expected characteristic of the cancer experience. So, they expect that, “You know, I'm going to have pain. It just goes with the territory. There's nothing I can do about it. It's just there. And it's going to happen.” 

Tiah Tomlin (06:51): 

One of your research interests is the idea of fatalism. Can you tell us: what is fatalism, and how does it impact symptom management?

Pat Washington, RN, PhD, OCN (07:01): 

Well, “cancer fatalism” is a term that is often used in the area of cancer prevention or early screening and detection. And also you see being used in clinical trials among people of color. Cancer fatalism is an individual's belief that death is inevitable when cancer is present, and so these individuals may believe that cancer is a death sentence. Most of the time they do. So, “It doesn't matter what I do. I'm going to die from the cancer. There's no way to cure it; I'm going to die.” That's the basic definition of cancer fatalism.

And there is research out there that has suggested that in general, African American or Black women and men are more fearful of cancer than the general population. And although these individuals acknowledge cancer severity, they tend to disbelieve or discount the relationship like between cancer and many of the known carcinogens. They oftentimes underestimate the incidence of cancer and tend to be pessimistic or fatalistic about its cure, and generally hesitant to seek medical advice. And in this case, the other medical care is delayed or forfeited. So those are just the basics behind the impact of these fatalistic attitudes in various areas of cancer, not just cancer screening and early detection of clinical trials, but in general.

Tiah Tomlin (08:40): 

So, Dr. Pat why is it important for someone with a breast cancer diagnosis to be able to talk to their doctor about pain?

Pat Washington, RN, PhD, OCN (08:50): 

Well, what we do know is that good communication is essential to getting continuous relief for any pain you may experience due to breast cancer or its treatment. And we also know that, when you're having pain, it can indicate something that's more serious. And so you definitely want to be able to communicate that with your doctor so that they can know. And the other thing that we also know about pain is that it can affect the healing process. So, there are things that can be done to help you, but it's just important to be able to communicate that to the physician because the physicians only know what you tell them, right? So, it's important to write down in your notes the type of pain and be as descriptive as possible with them so they can know which direction to take in terms of pain management. And then if your pain is not being managed well, it helps them to identify other interventions that can help to alleviate some of the pain associated with your cancer.

Tiah Tomlin (10:08): 

What suggestions do you have to help people to be able to have this conversation and talk to their doctor about pain or any other side effects that they may have? 

Pat Washington, RN, PhD, OCN (10:17): 

Good communication, like I said, is essential to getting continuous relief for your pain. And this may take some trial and error to find the right pain control regimen, but just know that your physician will work with you to get the relief that you need. I recommend keeping a pain diary and bringing it with you to each appointment. That's key because oftentimes we get busy and when we get there, we're worried about the appointment. For instance, if you have had scans, you're going to be getting the results of those, and that can cause some anxiety. And once you're in front of the doctor, you may actually forget all of the things that you wanted to discuss with the physician about your pain. Tt's important to discuss which side effects you're willing to tolerate and which ones you find unacceptable.

Pat Washington, RN, PhD, OCN (11:12): 

For instance, we know that these pain medications can come with various side effects like constipation. You may be working, and they may cause drowsiness — and so they may impair your ability to work or drive or take care of your family. Also discuss ways to prevent or treat any side effects of your pain medicine; your doctor and your nurse can help you with that. And if your pain is not being controlled, speak up! If it's not being controlled, if it's not working, just make sure that you make your physician or nurse aware of that.

And then the other thing I recommend is bringing along a friend or a family member with you to the appointment, if that's allowed. And the reason for that is because oftentimes your family members or friends may notice things related to your pain that you may not even be aware of. And sometimes, these pain medications can cause you to be drowsy and you may not pay attention to the side effects, but your family and friends that are on the outside looking in certainly can help you to have that conversation with your physician so that you can get adequate control of your pain.

Tiah Tomlin (12:30): 

Thank you. Well, hearing you talk about how it's important for us to have conversations with our doctor made me reflect on what I actually went through in treatment. And I did communicate to my doctor about the pain that I was in, and it actually took two weeks for me to see pain management. And in that instance, I didn't feel like I was being heard. So, what do you think, or what recommendations do you have to share with those who are tuned in, on what they can do when they feel like they're not being heard?

Pat Washington, RN, PhD, OCN (12:59): 

If you're feeling like you're not being heard, I think the number one thing to do is, first of all, make your physician or healthcare provider aware that you feel this way. Acknowledge that to them. And then also I think saying things like, “You know what? I know you're very busy, but I really need you to listen to what I have to say about my cancer pain today, because it is of great concern to me. I'm just not getting the relief that I need. And I really want to address this issue of pain so that I can experience the relief that I know I can achieve.” I think stating this upfront will most likely capture the healthcare provider’s attention. Sometimes you just have to stop them dead in their tracks, and they will take the time to address it with you.

What I recommend is that when you're there, make sure that you bring with all of the things that you're experiencing and the type of pain you're experiencing — that's key. They need to know whether it's burning, stabbing, throbbing — when does it occur? Does it occur with activity or when you're sleeping, is it preventing you from sleeping or you're sleeping too much? I think the more descriptive you can be with your physician or your health care provider, the more they will really help you to address the issue of pain and help them to help you. You have to make them aware of it. That's just key. And sometimes just stop them and say, “Listen, we need to talk about this pain management,” and go from there.

Tiah Tomlin (14:39): 

We discussed what patients can do, but generally speaking, what do healthcare providers need to understand about their role in providing effective treatment?

Pat Washington, RN, PhD, OCN (14:48): 

When looking at the research, some of the barriers associated with pain management indicate that people of color can benefit from educational interventions that dispel myths about opioids. And it is important to teach these patients to communicate assertively about their cancer pain with their healthcare providers. I recommend when you're speaking to the patient about managing their cancer pain, it's important to use simple explanations and terminology that are common to the group that you're addressing. And you may not know what is common to that particular group, but simplicity is always best. And to me, it doesn't matter what their socioeconomic status is, how educated — I believe simplicity is key. And so, what I recommend for healthcare providers is to utilize examples to communicate concepts. That's always a great thing.

State whatever it is that you want them to know, and then give them an example. And then I think it's important, too, to check in with the patient regularly, during the conversation, just to make sure that they understand what you're trying to communicate. Also, it's important to let the patient know that there are no bad or silly questions. Some people don't respond well because they think, “Well, that's a stupid question or a silly question.” I think the most important thing to remember is that knowledge is power. And so just upfront letting them know that they can have that heart-to-heart with you, and it doesn't have to be fancy language. Just tell me what you're feeling, and we'll work through this so that we can take care of your issue of pain.

And, as I said, just encourage them to keep a journal or jot down questions that they may have for the physician or healthcare practitioner at each visit. And then I think it's important to use a visual pain scale with pictures, rather than just asking the patient, “On a scale of zero to 10, what is your pain level?” Because zero means no pain; 10 is the worst pain you can have, but there are nine different levels in between those. So, if you use a visual like this pain scale that indicates the type of pain, and then there's a picture — a little face that's grimacing or not grimacing — that that's a little bit better because people can relate to that. It's something that they can visually look at and point to where they are on that scale. So, I do recommend visual pain scales with pictures.

And then outside of using pain scales to measure the patient's pain level, I think it's important to assess their pain treatment experience and some examples of questions that can be asked of the patient related to their treatment experience, include things like: “Can you tell me some things that you're doing to manage your cancer pain? What are some of the things that help with your cancer pain? And can you explain to me why they are helpful? What are the things that do not help with your cancer pain? And then once again, can you explain to me why you feel they're not helping? And then finally, what has been your experience of cancer pain treatment with medications?” And then there's another group of questions, that can be asked of the patient. And this is in regard to the meaning of cancer pain treatment, and they include things like: “What do you think about taking pain medications?

What are some of the things you consider or think about before you talk to your doctor or nurse about your cancer pain?” And, the final question that I like to ask is: “If you could choose between pain medication and other treatments for pain, what would you choose? And can you explain why?” Because, as I said before, oftentimes they're using home remedies and you may prescribe [pain medications] and the patient may not even take them. They may continue to use the home remedies.

Aside from having a discussion with patients about managing their cancer pain, I feel like healthcare providers need to also utilize educational materials to teach the patient because pain is a really difficult subject sometimes. But I think that when you use educational materials, you give them the information, it's something that they can take home and look back on.

We also know that educational materials are great at reiterating verbal communication. They can strengthen the teaching process. They can reinforce learning, enhance compliance, and increase knowledge about cancer and management of symptoms related to cancer, such as pain. And I think healthcare providers need to understand the importance of culturally sensitive educational materials to patients, because it's not enough to provide patients with educational materials that are ethnically appropriate, meaning that it's a brochure and it has African American people in it, but the language is all off — the terminology is off it's not simple, it needs to be written at an appropriate grade level. Simplicity is key. And so that's something that people really need to think about.

I often get the question: “What is cultural sensitivity as it relates to cancer education messaging?” Really, it's based upon the use of linguistics and stylistic characteristics of the individual you're targeting. Clearly, having an understanding of the cultural context of behavior can help to facilitate the transformation of health behaviors. And I think the ability of the people who develop these educational materials to place themselves within the context of a targeted population can help to facilitate the developer’s ability to capture the perspective of the target audience. And so, people say, “Well, how do you do that?” Well, if you're developing these materials, perhaps using a focus group to find out what's relevant will help you to understand standard key terms and translate that so that it can be understood by the patient. So I think that's important.

Additionally, when you think about culturally sensitive educational materials, they need to display ethnically appropriate men and women as role models, and they need to include ethnically appropriate vocabulary in printed symbols. And so that's just something to keep in mind when speaking to or educating this population.

And then finally, one of the things that I am a big advocate of is the use of lay health educators to deliver education. And we know that this has worked in many chronic diseases that people among people of color have experienced. So lay health educators kind of function as mediators — social network, social support, and in support groups, As it relates to cancer pain management, I think it's important, to recruit and train a person of color that is a lay survivor of breast cancer because they can effectively deliver the information to their peers. And this can be very effective in overcoming barriers to effective pain management, because the women may actually share similar language, the things we've talked about — social and ethnic characteristics, religious beliefs — with the target populations.

Tiah Tomlin (23:27): 

Well, this was awesome, Dr. Washington. You've shared a lot of great nuggets and I want to thank you so much for being with us. To watch or listen to more interviews like this one, visit us at lbbc.org. In addition, if you are looking to connect with other people, we encourage you to join our closed Facebook groups: Breast Cancer Support: All Ages, All Stages and Breast Cancer Support for Young Women. Thank you. Stay safe and see you soon.