Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered podcast. I'm Dr Neha Pathak, WebMD's chief physician editor for health and lifestyle medicine. When someone you love is in the hospital, it can feel overwhelming. There are new faces walking in and out of the room, complex medical terms, and decisions that often need to be made quickly.

In the middle of that, many patients and families don't realize there are people within the healthcare system whose role it is to serve as a resource and guide to help them through what may end up being one of the more challenging times in their lives. One of these resources is a patient navigator, a professional who can help coordinate communication, connect patients with the right members of the care team, and advocate for their needs when the healthcare system feels confusing or difficult to navigate.

In this episode, we're talking about how patient navigators support patients and families during serious illness, how they help coordinate care inside the hospital, and how you can work with them to make sure your questions, concerns, and goals are heard. Joining us first is registered nurse Ashley Williams at Roswell Park Comprehensive Cancer Center to talk about how patient advocates and clinical coordinators guide patients through their care journey, helping them understand treatment plans, know who to call with questions, how to navigate second opinions, and stay organized during what can often be an overwhelming time.

And later in the episode, we'll also hear another perspective on a care team from Lauren LaTourette, a clinical social worker. But first, welcome to the WebMD Health Discovered podcast, Ashley.

Ashley Williams, BSN, RN: Thank you for having me. Excited to be doing this with you today.

Pathak: I am really excited to jump into our conversation and so thankful for your time. But before we do, I'd love to ask about your own health discovery, your aha moment around identifying patient advocacy and patient navigation as so important to care.

Williams: So what really drove me to it is how many patients expressed uncertainty about upcoming tests and procedures, how chemotherapy, immunotherapy, radiation would affect them, how to prepare for treatment, who to call if something were to go wrong. And seeing this anxiety in patients motivated me to take on the role as a nurse coordinator to help provide coordination, clarity, and advocacy for them.

I've had a family member who was diagnosed with grade four glioblastoma, and just knowing what I know now, I wish that I knew of all these resources available to her that I eventually learned after I became an employee here. So I was like, “Hey, this is somewhere where the nurse coordinator, the patient navigator, could be utilized to help explain all these different resources available to patients.”

Pathak: That is so helpful. So let's start there. I think it's really important to understand the terms. So I think people have probably heard of patient navigators, clinical coordinators. Can you help us understand what all of these terms mean, and what does it mean when we have a patient navigator or clinical coordinator available to help us?

Williams: I think that we can consider that that's your go-to person in any of the situations. The patients knew to directly call me and ask for me, even if it wasn't directly nursing related, when I was their go-to person on their whole journey here.

Pathak: I know for myself, sometimes it's really hard to know, who am I supposed to call for this particular question? If it's a question about a medicine or if it's a question about an appointment.

I think as patients, sometimes we have this fear of bothering our clinical team. So how do you talk to patients so they know who to call and when to call?

Williams: So first and foremost, whenever we have a new patient in the clinic, myself and our clinic liaison would go meet them, and we'd put together packets of information to give them about when to call. A big thing patients are now using is the patient portal, and we spend a lot of time with them educating them on when to be using that versus when to call and who to call, going through that and giving them not only the verbal education, but written education as well to take home.

I think patients might be afraid in asking for extra help. Maybe they don't want to come across as being high maintenance, or maybe they're creating more work and more of a burden for staff, maybe fearful of just being judged for those reasons. They don't want to be labeled as needy, per se. So those are things that I could see as potential barriers coming from the patient's eyes.

I judge everybody the same. Everybody gets the same care and attention, so I don't perceive it in any particular way. I think every patient deserves to have all their needs met, and if it's a service we have, why not be utilizing the service?

Sometimes you would want to connect with a patient advocate if you're struggling to get the care that you need, if you're facing certain types of barriers. Help us understand a little bit more about that role. So, you know, what I like to say is a patient advocate is someone who helps patients navigate the healthcare system, maybe understanding their care and ensuring their needs, preferences, and concerns are heard. Patients often benefit from involving an advocate when they're facing maybe a new or a serious medical diagnosis.

They're feeling overwhelmed or confused by the medical information they received, unsure how to communicate with their healthcare team, needing help coordinating care across maybe multiple providers, or experiencing barriers to care. Wanting support during major decisions, like lacking family support.

I think it starts day one, day of diagnosis. You get hit with a lot of information on day one, from the diagnosis to what treatment may look like or maybe needing further testing. Is insurance, or are we in network, out of network? Maybe they live farther away. Is transportation an issue?

There's so many things that go into it, and that's where I pride myself where I work, because we are comprehensive and we have everything under one roof. I know other centers aren't necessarily like that, but we are. So we have everything here, and it's working with different services to make all the pieces of the puzzle fit together for the patient.

Pathak: Yeah, that's really helpful, and I think oftentimes people feel bad when they feel like they're not getting the care they need from their team, and they have questions about second opinions or other teams that they might want to reach out to. And I think that really helps in terms of knowing that there's a patient advocate. You're basically finding someone in the healthcare system that can help you connect with a second opinion if that might be useful. So talk us through common misconceptions that patients have sometimes when they want a second opinion or they feel like a second opinion is necessary.

Williams: So first and foremost, I think thinking a second opinion is a common, reasonable, and empowering step in managing your own healthcare. It helps patients better understand their diagnosis and treatment options so they can make confident and informed decisions. Seeking a second opinion doesn't mean their doctor necessarily missed something, which I think is what people often think of why others may seek a second opinion. But in reality, they're normal, proactive parts of navigating complex or life-challenging medical decisions.

Patients seek it to confirm their understanding of their diagnostics, explore all available treatment options, feel more confident in a major decision, ask questions that they maybe didn't ask at the first appointment. It doesn't indicate something is wrong. It's simply a way to gather more information.

I would suggest taking what each person has said and writing it all down. Have a list in front of you of what each doctor is saying and what their recommendations are. And then it's important to know, at the end of the day, what are the patient's wishes? What do they want? And it's okay if they choose to go against a doctor's recommendations.

They are the captain of their own ship. They are the driver. Yes, the doctor can make their recommendations, but at the end of the day, it's up to the patient, and they have to do what is best for them.

Pathak: Can you talk a little bit about health insurance? Are second opinions covered, especially if the team that is helping you with the second opinion may be requesting further testing or lab work or imaging that you may have already had? How does that work?

Williams: Most health insurance plans do cover second opinions, especially for serious diagnoses or major treatment decisions. We here, where I am, often are getting that okay from the insurance to go ahead and get that opinion, especially if it's an out-of-network insurance plan.

Pathak: Help us then figure out how patients go about reconciling the differences, if there are any, between the first opinion, second, third. What would be your advice around if there are differences in management strategy or treatment strategy? How do you help encourage patients to reconcile those differences?

Williams: So receiving two different medical opinions from different providers, I'm sure, can feel very confusing, but it actually could be a valuable opportunity for a deeper understanding, better decision-making, and a more personalized care plan. Patients should be comparing the recommendations side by side.

Write it out on a piece of paper. Ask each provider why their recommendation differs from somebody else's. Bring questions back to both providers. Ask if there's any additional testing that could clarify the situation as to why they got different opinions. And this is where you can involve a patient advocate, a nurse navigator, or an oncology nurse coordinator.

Consider getting more opinions if there are conflicting ones, but at the end of the day, the patient needs to choose the plan that feels the most clear, safe, and aligned with their needs.

Pathak: I think that is such a key point, and that's really what we mean when we say shared decision-making is now that you've got all of this information. I love how you framed it, which is now thinking back again to your own goals, your quality of life, what's easiest for you in terms of access to these various clinics.

What other pieces of information should people be thinking about or trying to factor in when they are trying to reconcile some of these differences of opinion?

Williams: What I would recommend is that they're staying organized, making sure that they are keeping all of these records in one place, and to have a single point person, like a nurse navigator, to help streamline everything for them. They're gonna wanna prepare questions comparing recommendations side by side and really taking the time to reflect on what is balanced for them because it is an overwhelming situation.

I think it's important to ask: What is the plan for today? Who is involved with the plan? And what are the long-term goals to maybe get out of the hospital? What needs to be met?

Pathak: Oftentimes, when you require such in-depth analysis of what's going on with your health condition is when you're feeling the most vulnerable. You've gotten news that is overwhelming, potentially, and so really, it's a question not only of navigating the system, but navigating your own feelings, navigating what it means for the loved ones in your life to help you with this condition.

So how do you pull in someone's support network or caregivers into this process?

Williams: Oh, it's a hundred percent beneficial to have a network of people if their patient's not doing well, that they have somebody else that can be that sound voice. Can they safely even get to appointments when they're coming to appointments? Another person that's hearing that information. How you and I may interpret something may be completely different.

And it's nice to know that you can bounce that back to one another. Hey, did you hear what I heard? Did we interpret it the same way?

So personally, what I do is day one, meeting the patient, I ask, who is your support network? If they have somebody they bring with them to their appointment and who did you bring with you today, and what role do they play in? But I think it's so important to be establishing these things at that day one to see who they have. And if there is nobody, because often we see that, that they don't have any family friends here, local, that's when I will then loop in social work, another layer to help support the patients, is to see what their needs are and what other assistance that we could help provide the patients.

Pathak: So give us a sense of some of the things that a social worker can help with.

Williams: It could be something as simple as transportation or helping them get set up, whether a patient may be wanting to transition to hospice, setting up that. Maybe they're struggling with some addiction issues. Again, something social work is helpful with. They are so important. And where I am at, we are fortunate enough to have social workers in all of our clinic spaces as well as on the inpatient side.

Pathak: Anyone else that we should be thinking about when we're thinking about all the ways to advocate for yourself within the healthcare system?

Williams: The big thing is the nurse navigators, the social workers, or even case management is another one that we use here. And all these people that we've now just mentioned, they all serve as a way, as an advocate for the patient, right? They can attend appointments with the patients.

They can help interpret medical information, coordinate care and referrals, and just assist the patient as needed, even with insurance and logistics. But in all ways, everybody serves as an advocate in one way or another.

And I love how you framed earlier that given all of these pieces, it's so important to be organized and to have all of your information ready at your fingertips so that you can share it with different members of your team when you might be confused about what that next step is gonna be. So what are some of the tips, tricks that you have?

Pathak: What are some of the ways that you've seen people really get themselves organized that you think could be helpful for others to learn from?

Williams: Create like a little Excel spreadsheet that you can print. So maybe it has all your surgeries on it, all your medications on it recently, meds that you've been taken off, allergies, hospitalizations.

If you can keep kind of that running list updated and then printed out so that when you're going to appointments, here, here's my most up-to-date stuff, that would be super helpful. And that's something, as a nurse coordinator, that I have always encouraged patients to have.

Pathak: So I would love to cede the last few minutes we have together to you to speak directly to our audience and maybe give us some examples of how you would suggest someone get started working with their nurse coordinator, their patient navigator, and then potentially how to pull in or ask for some of these other services if they're necessary.

Williams: I think first and foremost, at visit number one, is to ask: Do you have a nurse coordinator? Do you have a patient navigator? To be asking for this right up front. And then if they do, just sitting down, having that open conversation so that we can identify needs upfront. And then once we can identify potential needs is then where we can then loop in whether it be social work or another part of a team, but putting it all right out there.

And just looping back to the patient advocate. Patients or even members of the healthcare team often think that when an advocate gets involved, it means conflict, but that's not necessarily the case. People assume, you know, a patient's unhappy and they don't trust the provider. There's a disagreement. Something has gone wrong. But in modern healthcare, I don't think that's the case. Advocates, we need to make it more of a normal and a helpful part for the patient as providing patient-centered care.

I think it's very important that patients feel safe and comfortable to be able to voice that, hey, I have a lot of information being thrown at me right now, and we need to just pause because I'm now not retaining anything. And I think this is where it's so important that us as healthcare providers are able to give a patient a business card or any written material.

Hey, sometimes there's education pushed over in a patient portal. I know we do that all the time, as once we review something, we push the education over as well. Hey, you've heard it verbally. I'm giving you a written copy. I'm sending you something over electronically so that they can go back to it as a reference then.

Pathak: That's really helpful and such concrete information. I wanna thank you so much for your time. I really appreciate it, and I think it's really important for anyone listening today to understand that these teams can be part of your healthcare system and to reach out so that you can connect with someone who can be the face of your care in sometimes a very large organization.

Williams: Yes, thank you for your time and having me on today.

Pathak: Now we're gonna pivot from the conversation with Ashley to a discussion with Lauren, a clinical social worker who's joining us to provide deeper insight into working with your healthcare team in complex situations. Lauren LaTourette is a clinical social worker on the inpatient palliative care service at Thomas Jefferson University Hospital.

She works as part of an interprofessional team alongside physicians, nurse practitioners, chaplains, and other healthcare professionals supporting patients with serious illness and their caregivers.

Lauren, many listeners may not know how they can benefit from working with a patient navigator or a clinical social worker. Could you explain how someone listening could benefit from working with one, and when they should ask to be connected with a patient navigator or a clinical social worker in a hospital setting?

Lauren LaTourette, LCSW, APHSW-C: A navigator is a role that is built around patient advocacy from a professional that works within the system, and so they utilize their skillset and their knowledge to help ensure that patients' needs are met. Someone could benefit from working with a patient navigator when they are facing challenges in their healthcare, whether that's issues in receiving clear communication, addressing barriers that are impacting their access to care, or difficulty in resolving issues related to our complex healthcare system.

Pathak: When someone's hospitalized, many people come in and out of the hospital room, so we know that you might be seeing nurses, physicians, specialists, and it can feel really overwhelming.

What are some practical ways a patient or family member can use a navigator or social worker to help coordinate communication and make sure that their questions reach the right person in the midst of all of these different health professionals when they're in the hospital setting?

LaTourette: Some practical ways a patient or caregiver can use a navigator to coordinate communication are by making their questions, concerns, or needs clear to the patient navigator. This will help the navigator to serve as an advocate and to identify the best healthcare professional to assist in ensuring that communication questions are answered and issues are appropriately addressed.

For the patient, this may mean writing questions down as they arise, since hospitalizations often mean a lot of new information from a lot of different team members, and this may come from healthcare team members from various professions or specialties. So it's helpful that patients can include a support person when receiving new or updated information about their healthcare.

This allows a second person involved in their healthcare to hear the information and ask questions, and it would be important when working with a navigator to include your support person so they can help to navigate the care plan and the new information.

Pathak: We know that patients and families often face overlapping fears, and then also maybe different cultural needs, financial challenges, or uncertainty about what their diagnosis actually is or what it means. How can someone leverage their interactions with the patient navigator to identify what they're struggling with and to get connected to the right resources?

LaTourette: Someone can leverage their interactions with a patient navigator to identify needed resources by being open and honest about the barriers they may be facing that's impacting their healthcare. This will help a navigator to identify the other healthcare team members who are able to assist, whether that's a nurse, a social worker, a chaplain, a physician, or any other supportive healthcare team member.

As the navigator will have an understanding of the healthcare team members and their roles and their skillset, and who's needed to address barriers, they additionally can help with care coordination as they include the other needed team members and help to give a background to understand the patient's perspective, what their worries are, and what their concerns are to help make sure their needs are addressed.

Pathak: And can you talk to us a little bit about how patients and family members can work with the patient navigator or social worker to address next steps, whether that's just tomorrow's plan, whether it's more testing, discharge planning, or big treatment decisions and goal setting?

LaTourette: Patients and their caregivers working with the patient navigator can work to address the next steps by clearly outlining what is ahead in their care plan. And this will often require including many other healthcare team members with various expertise, whether that be a treating physician or a specialist or other interprofessional team members. And navigators may assist the patient or their caregiver in exploring what questions to ask the healthcare team.

Additionally, navigators often understand the course of a hospitalization and stepwise what often occurs. They can be essential in outlining the expectations for treatment plans and what factors may impact the plan to help provide expectations and an overview on what to expect.

Pathak: What questions or concerns in family dynamics should a patient or family member bring to their navigator so that the navigator can be their strongest advocate possible?

LaTourette: Questions or concerns or family dynamics that a patient could bring to a navigator could be ensuring that the correct support person is included for information sharing with the healthcare team. This would be the patient identifying their healthcare proxy or support person for decision-making with the patient navigator. Additionally, it would also be important for patients to share with a navigator who they do not want to receive information about their healthcare, such as a visitor that might be at the bedside or even a family member that they don't wish to include in their healthcare.

Pathak: I'd like to close this episode by sharing my three key takeaways. First, patient navigators, nurse coordinators, and clinical social workers can help guide patients and their families through complex healthcare systems and moments of crisis. These professionals act as a central point of contact and can help coordinate care, answer questions, and connect patients and their caregivers with the right members of the healthcare team. They're there to help patients understand what to expect during hospital stays, treatments, and follow-up care.

Second, asking for help, second opinions, or patient advocacy is a normal and empowering part of your healthcare journey. Seeking a patient advocate or a second opinion doesn't mean something is wrong or that you're challenging your doctor.

Instead, it helps you and your caregivers better understand your diagnosis, explore treatment options, and make more informed decisions about care.

Third, staying organized and involving your support network can make navigating care easier. So keeping records of medications, tests, and medical history all in one place, writing down questions, or bringing a trusted support person to appointments can actually help you process complex information and communicate more effectively with your care team.

If you or a loved one is navigating a serious diagnosis or complex care, remember that you don't have to do it alone. Asking for help from someone in the healthcare system, seeking clarity, and building the right support team are all important steps towards getting the care that you need. To find out more information and resources about patient navigation and clinical social work, make sure to check out our show notes.

Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.