Transcript of Palliative Care for Bladder Cancer Patients with Dr. Lee Hugar

October 17, 2022

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Voice over:

This is Bladder Cancer Matters. The podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network. Otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer. The proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network or as many call it BCAN. Producers of this podcast. This podcast is sponsored CGEN Astellas, EMD Serono Pfizer, Genentech, and Merck.

Rick Bangs:

I’m pleased to welcome today’s guest Dr. Lee Hugar, Dr. Hugar earned his medical degree from Emory University School of Medicine, Atlanta, and completed his general surgery internship in urologic surgery residency at University of Pittsburgh Medical Center in Pennsylvania. He recently completed a urologic oncology fellowship at Moffitt Cancer Center in Tampa, Florida, and just joined Lexington Urology at Lexington Medical Center in Columbia, South Carolina. His research has focused on healthcare delivery and access to care for patients with urologic cancer, specifically patients with bladder cancer. For this research Dr. Hugar is recognized nationally as an advocate for incorporating palliative care into urologic care, maximizing both cancer control and quality of life for patients with any stage of urologic cancer. He was also a BCAN John Quale Travel Fellow and an invited speaker at the 2019 BCAN Bladder Cancer Think Tank. Welcome, Dr. Hugar. I’m so excited to have you join me on our podcast.

Dr. Lee Hugar:

Thank you so much, Rick. I’m really excited and honored to be here on the Bladder Cancer Matters Podcast.

Rick Bangs:

Okay. So let’s start with kind of a basic question, which is what is palliative care?

Dr. Lee Hugar:

So that’s a great question, because palliative care is kind of a confusing and scary topic for a lot of people, especially if it’s brought up to them by a doctor. But it’s really quite simple and can be tailored to any individual. The Center to Advanced Palliative Care defines it as specialized medical care for people living with a serious illness, which is pretty broad. Oftentimes at least in my training and hopefully my practice I’ll apply it to patients specifically with cancer. Those that have advanced cancer or pretty severe symptoms. And the purpose of palliative care is to relieve the symptoms and stress of an illness. In my case, it would be cancer. The main focus of it is to support the patient, support the family and allow for disease directed life prolonging therapies to continue for as long as the patient wants to.

Rick Bangs:

And what would be some indications that I might need palliative care as a patient or my family member might need palliative care?

Dr. Lee Hugar:

So a straightforward, subjective measure would be distress, and patients and their family members can be distressed for any number of reasons. It could be spiritual distress, financial distress. There could be some kind of social discord in the patient caregiver dynamic, if there are different goals or people are grappling with a diagnosis and such like that in different ways. And then there are more physical signs and symptoms. In bladder cancer, for example, patients may have really severe urinary tract symptoms, or they may have pain from a metastasis or severe nausea, vomiting, and difficulty getting nutrition, if they’re on chemotherapy. And there’s a whole laundry list of possible indications for palliative care. But really the simple way to think about it is if something is distressing the patient, be it physical, mental, or other, then palliative care could potentially help them out.

Rick Bangs:

Okay. And so by helping them out, what would the patient see as some of the benefits?

Dr. Lee Hugar:

Well, they could be mental or spiritual in respect to having a conversation about something, whether it’s prognosis or some uncertainty with their provider that may provide some closure or peace of mind regarding their cancer diagnosis. They could also just feel physically better because palliative care sometimes involves the prescription of medications to treat various symptoms, whether it’s nausea, GI symptoms like constipation and diarrhea, pain with opioids or alternatives. So those would be some of the ways that it would impact patients and make them feel better. But oftentimes these therapies, these medications or other things are administered just in the usual day to day medical care these patients receive. Not necessarily under the auspices of palliative care. So many times patients are receiving palliative care principles directed at making them feel better without actually knowing it.

Rick Bangs:

And I think there tends to be some confusion and some people associate palliative care with giving up. So is that the case and our treatments actually stopped?

Dr. Lee Hugar:

No. So one of my favorite lines for discussing palliative care with someone is that palliative care is appropriate for patients of any age, with any condition. When it comes to cancer, patients can have any stage of the disease, whether it’s locally confined, hopefully curable cancer, or a very advanced metastatic cancer. And so for that reason, by definition, palliative care is administered alongside other therapies that are aimed to control that disease. So curative therapies such as major surgery or chemotherapy or radiation, all of these can be administered alongside palliative care. And just because a patient needs an extra layer of support through palliative care, or is referred to see a specialist who practices that full time, that doesn’t change at all their relationship with their surgeon or their oncologist or change what treatments they can and can’t receive.

Rick Bangs:

And would there be different levels of palliative care? Is there some kind of progression in the palliative care spectrum?

Dr. Lee Hugar:

Palliative care is basically tailored to the individual patient’s needs at a given time. So if a patient has many poorly controlled symptoms or high level of distress, the level of palliative care would be high. They may need to see their physician at a more regular frequency, have medications adjusted and things like that. If symptoms or distress are low, then the level of palliative care involvement would be low. So a patient could even be discharged from a palliative care specialty team or a focus with a patient’s oncologist. If they’re getting palliative care primarily from an oncologist or a surgeon, they could kind of shift away from that focus as needed based on their symptoms at the time. Patients towards the end of life, if that’s where they feel that they are, or a physician feels like a patient is kind of nearing that stage of life based on the severity of disease or other health problems, some patients, or if they’re aware of it, or providers may begin discussing hospice as something they’d want to pursue.

Rick Bangs:

Okay. And then I think there’s a lot of confusion on this point, which is, how is palliative care different from hospice?

Dr. Lee Hugar:

So hospice is a subset of palliative care, and it’s really only for those people who are very near the end of life, who want to focus on something other than curing or controlling their disease. So if you think of palliative care as a pie, hospice is just one slice of that pie. So we’ve discussed how much palliative care has to offer patients with any stage of a chronic illness. Now, when patients have an advanced illness or disease such as cancer that no longer responds to therapy or their functional status declines so much that the therapy’s hurting more than helping, hospice is an option for them. The goal of hospice is to provide comprehensive comfort care for the patient and their family. It’s important to note that care of the patient continues and patients are still able to see and followed by their general practitioners and oncologists that have been following them for years. So the care has never stopped in that case. In fact, it intensifies. It’s just the focus and the treatments are kind of shifted in goal.

Rick Bangs:

And then hospice is typically people who have a predicted six months or less to live, is that right?

Dr. Lee Hugar:

Right. It could be a range six to 12 months. There’s no perfect science in estimating a patient’s estimated survival. It’s probably one of the hardest things to do, and that’s what makes treating advanced cancer so difficult. Many treatments like chemotherapy can be quite toxic and uncomfortable for patients to receive. And it’s a balance for physicians to figure out how much to subject patients to side effects and symptoms if there’s going to be a little return. Now, people are trying to look into various ways to estimate that, but really there’s no perfect science there at all.

Dr. Lee Hugar:

The good news is that if a patient and their physician have a discussion and feel like they’re nearing the end of life, a patient can elect to enroll in hospice. Typically, that’s provided by a hospice service. So it’s a separate team that has the full supply of physicians, nurses, social workers, chaplains, all the above, pharmacists that check in with that patient regularly and even make house calls from time to time. But patients can transition into hospice and out of hospice. If patients are somehow doing a lot better, they can unenroll from those services if their outlook changes. So it’s never a one way street. Certainly not with palliative care and not even with hospice.

Rick Bangs:

Tell me a little bit about how that transition would happen. If I’ve been in palliative care, how does the transition to hospice work? Am I dealing with the same people? I’m guessing the answer might be no. How does this all transpire?

Dr. Lee Hugar:

So usually the team providing palliative care and the team providing hospice are different. Hospice can be administered in a hospital setting or in an outpatient setting. And Medicare, Medicaid, and most private insurance companies cover hospice care. But the intensity of that care is different, and the kind of resources that patients both need and require from hospice are different from palliative care. So they kind of need separate teams. Palliative care is often administered in an outpatient setting, kind of in your usual medical clinic. Sometimes they’re inpatient teams. But hospice is almost more of a community based care. The goal is for patients to be at home and not be running around a doctor’s appointment. So just the way the team tends to the patient is different. So it’s usually different team.

Rick Bangs:

And who’s going to place the order for palliative care? Is that going to be my primary care? Is that going to be my cancer specialist? Who’s going to make the call?

Dr. Lee Hugar:

I think first and foremost, the patient and their family members. And once that decision is made an oncologist or the patient’s primary care physician can get the ball rolling in terms of making a referral. I personally haven’t done that. I have had conversations with patients that have resulted in either me providing palliative care to the patient primarily, or getting them referred to the multidisciplinary palliative care team. But I haven’t been involved in a hospice transition like that. Now I’m sure you kind of go through the usual things of figuring out who’s in your community and what groups are supported by your insurance. But once those kind of administrative details are figured out, I think the hospice care team will, and patient will work together to find a system that works for them and helps them live their most comfortable life.

Rick Bangs:

And who would be on my palliative care team?

Dr. Lee Hugar:

So palliative care can be given basically two ways. You have primary palliative care and you have subspecialty palliative care. Primary palliative care are the basic supportive care needs that anybody who practices medicine should be able to administer a patient, whether it’s treating pain, treating symptoms, having a difficult conversation, any type of physician can do that, or provider. The multidisciplinary palliative care team is a little more comprehensive. And again, it’s tailored to what the patient needs, but the resources available to the patient include physicians, advanced practice providers like nurse practitioners or PAs nurses that call and talk through symptoms with the patients, but also therapists, nutritionists, chaplains, and other people that can help support the social and mental wellbeing for the patient.

Rick Bangs:

So it’s really complete care?

Dr. Lee Hugar:

Yeah.

Rick Bangs:

So having gone through this with my dad who had ALS, I think it would be helpful to talk a little bit about the role of the family. What role can family members play relative to palliative care?

Dr. Lee Hugar:

So the goal of palliative care is always to improve the quality of life of both the patient and their family. So both were at the center of palliative care and oftentimes palliative care is indicated for medical reasons, but sometimes it’s due to distress of the family member. The patient may be doing okay, but the family member needs extra support in their day to day life. Whether it’s in caring for the patient, caring for themselves and navigating this new situation they find themselves in. So their role would be directly involved if they were to need it. Other situations I’ve come across are where the family member is advocating for more support, better symptom management, trying to improve their family members frame of mind, and from that standpoint, they are acting as an advocate to utilize palliative care for their loved one.

Rick Bangs:

And sometimes they’re in almost a better physician to judge the things that are happening and what would be helpful.

Dr. Lee Hugar:

Yeah. It often helps to have an outside perspective when you’re in the thick of it.

Rick Bangs:

So how long can a patient receive palliative care?

Dr. Lee Hugar:

Indefinitely. The goal is that through palliative care, a patient’s distress and symptoms improve and maybe through that process their cancer is controlled or cured and they would no longer need palliative care. But there’s no timeframe. And as we discussed before, it can ebb and flow. So the intensity of what services or type of support they need may wax and wane over time.

Rick Bangs:

Let’s talk about palliative care relative to bladder cancer, where most patients are non muscle invasive. Why is palliative care an important topic for bladder cancer as a whole?

Dr. Lee Hugar:

Well, starting from non muscle invasive disease, bladder cancer is an extremely expensive cancer to treat. Its one of the most expensive cancers to treat and survey. So social distress and financial, what we call financial toxicity from healthcare these days is a major problem. And that’s something where providers can administer primary palliative care with respect to helping patients navigate those challenges. In addition, patients with non muscle invasive disease often need intravesical or in bladder therapies to control their cancer, and we do that because it decreases recurrence rates and it decreases progression of more invasive disease and can provide a durable cure for many patients. But it does come at a cost of symptoms for some people. And so urologists in particular provide primary palliative care by helping manage those irritative or storage related lower urinary tract symptoms some patients might have from intravesical therapy.

Dr. Lee Hugar:

Beyond that about a quarter of patients with non muscle invasive disease will progress to muscle invasive disease. And about a third of patients will present with that outright. And these are folks as you are well aware, Rick, that have a lot of life changes to grapple with and may need to receive chemotherapy, that some people tolerate differently than others and make a decision to undergo a major surgery. And that’s kind of where my passion and focus has been set, because I feel like the people who take care of patients with bladder cancer are very passionate about it. And unfortunately, because of our medical environment, there’s never enough time to give every patient the amount of time they deserve. But I think in particular, for people that are grappling with muscle invasive bladder cancer and what that means we could be doing more and palliative care and palliative care techniques is something that can fill that gap.

Rick Bangs:

And do you think its… I mean, how close are we to fully utilizing palliative care in bladder cancer?

Dr. Lee Hugar:

So in residency, I did some research looking at some national cancer registries and the use of palliative care by looking at billing codes basically, and only 4% of all bladder cancer patients in our data set had any encounter for palliative care. And even when we looked at folks that had advanced disease, which was defined as metastatic or node positive or a high tumor stage, it was still just 4%. So it’s very little, but I think through the actions of BCAN, some of my research mentors amplifying the research I’ve done, and patient advocates associated with BCAN who are kind of bringing this up, palliative care is getting a little more play, I think, and hopefully more awareness is being raised.

Rick Bangs:

So to make people a little more comfortable, insurance will cover palliative care, right?

Dr. Lee Hugar:

Yeah. It should be covered as any other outpatient visit is covered. You know, you go to your primary care doctor, you discuss problems, A, B, and C, and address them in this certain manner and come up with a follow up plan. And so ideally palliative care is administered on an outpatient basis because that means that the patient is at home and hopefully not in crisis. And so that is just reimbursed any normal office visit. On the unfortunate situation where maybe a patient is admitted to the hospital and has increased symptoms, pain or distress, and palliative care is consulted, then it would be covered like any other hospital consultation.

Rick Bangs:

Okay. So we talked about ebbing and flowing and resetting and discontinuing. There’s a specific question, I think that’s important, which is if I’m on palliative care in a clinical trial becomes available, that would be relevant to me. What happens then?

Dr. Lee Hugar:

You would pursue the clinical trial you’d be interested in. Palliative care, as you mentioned before, doesn’t equate to giving up and patients don’t have to stop any treatments they’re on, just because they’re interested in receiving palliative care. An interesting metaphor that somebody at the AUA last year shared with me was that you can think of palliative care as an umbrella. You would rather have an umbrella before it starts raining than to get caught in the rain. And just because you have an umbrella, doesn’t mean you’re going to cause whatever upcoming rainstorm there is. So the same thing with the clinical trial, just because you have the umbrella, it doesn’t shield you from having access to this treatment or that treatment.

Rick Bangs:

Okay. That’s great to know. You mentioned to me in a prior conversation that you’d like to see more people do palliative care. Tell me why that’s important to you?

Dr. Lee Hugar:

So many patients have unmet cancer care needs. And some studies estimate that it’s up to half of bladder cancer patients. And a good chunk of those patients have multiple unmet needs, whether its physical symptoms, informational, social needs. And so I really think that providers can maximize the quality of life of their patients by helping determine what their cancer goals are and better managing their symptoms. Many times physicians are too busy trying to treat one symptom or another and only stop to ask important questions once it’s too late or near the end of life. And a major component of palliative care is communication skills. And so if we were just to focus on that aspect of palliative care and use a little bit of extra time to communicate, try to hammer down, what’s most important to the patient that day, that visit what’s bothering them, then I think we can uncover the most important goals of the patient and address those first before moving on to other things.

Rick Bangs:

Yeah, I think those goal setting conversations are so important. So you’ve seen a lot of patients. Can you share any lessons learned from your patients regarding palliative care?

Dr. Lee Hugar:

Yeah, so most patients are very appreciative of the discussion. I think many are very interested in what it has to offer, especially after they’ve heard my spiel on it, which kind of includes a good definition of palliative care. Because before that time, most people have misperceptions of what palliative care is. They may think palliative care and hospice are the same thing. They may not know that there are resources or teams dedicated to managing things that aren’t directly related to curing their cancer. And so when I discuss what palliative care is, how it’s administered, how we can go about trying to get the patient a little more support, most people are very interested.

Dr. Lee Hugar:

As you’ve just kind of discussed taking the time to ask what’s important to patients will often uncover unmet needs that you can either address at that visit or refer to a palliative care colleague to address. In the situations where I’ve been lucky enough to really have the time to just sit with the patient and listen to them and maybe drill down on some of the statements they’ve made to get the core of what they’re feeling, we come up with a couple things so we can manage better. And its at that point, when I bring up palliative care that something really clicks and I feel like we’re doing some real good at that point.

Rick Bangs:

Yeah. I can remember having some of these calibration conversations and with my dad’s situation, and it was really helpful because it was constantly changing. The goals were different based on when we were having the conversation. So any parting thoughts?

Dr. Lee Hugar:

So I just first and foremost, want to give BCAN a lot of credit for putting palliative care on the big stage. At the 2019 Think Tank, they had a session on palliative care. I’m just really appreciative that they’ve invited me to participate in this podcast with you, Rick, and really just kind of amplify the good that palliative care can do. I just think it’s a great thing. Really reinforces the patient centeredness of the organization. And they do a whole lot of work with the FDA and other kinds of treatment related things, and I think it’s really quite an honor that they’ve put that same effort into a specialty or an approach to medicine that’s often overlooked. I think it’s really commendable.

Rick Bangs:

Well, it’s really a pleasure to hear you talk about it and hear the passion and the insights that you provide. So thank you for what you’re doing and the research you’ve done as well. So I want to thank you for your time today, Dr. Hugar, you’ve given us really a great introduction to palliative care and what to expect from it. For more information on palliative care, please visit the BCAN site at bcan.org and search for palliative. In case people would like to get in touch with you. Could you share your Twitter handle?

Dr. Lee Hugar:

Sure. You can find me on Twitter @lee_hugar_md.

Rick Bangs:

Great. Just a reminder, if you’d like more information about bladder cancer, you can contact the bladder cancer advocacy network at 1-888-901-2226. That’s all the time we have today. Thanks for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Hugar.

Dr. Lee Hugar:

Thank you, Rick.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.