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.
Hi, my name is Rick Bangs and I’m 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. This podcast is produced by BCAN. In these podcasts I interview bladder cancer patients, survivors, caregivers, and medical and research professionals to bring our listeners insight into topics of interest to the bladder cancer community. Today’s episode is brought to you by FerGene, a gene therapy company dedicated to creating and delivering innovative solutions to urologists and those affected by non-muscle invasive bladder cancer. We are grateful for their support. Welcome to part two of our episode with Dr. Heather Goltz, a licensed master social worker. We’ve been discussing oncology social workers and when they might be right for bladder cancer patients.
We’re back with Dr. Heather Goltz talking about a valuable and often underutilized resource available to bladder cancer patients, partners, caregivers and families, the oncology social worker. You mentioned caregivers and loved ones when we talked in the last segment and they clearly play an important role. So let’s suppose I was diagnosed with bladder cancer or someone I love and or care for was diagnosed. And let’s suspect that I’ve been told or suspect that I need an oncology social worker. How would I go about finding one?
Oh, that is a great question. I have the honor and the privilege of being the current Education Director for the Association of Oncology Social Work, AOSW. And if you are a patient or a loved one or a caregiver who is interested in locating an oncology social worker, you can actually go to the AOSW website and there’ll be a link to our directory and you just click find AOSW near me. And when you do that, it is actually going to take you to a page where you can type in your city, your state or your zip code. You can indicate within so many miles, I think up to a hundred.
You can search for the specialties that they have, or even the patient population that that oncology social worker is most experienced with. And that can help you locate an oncology social worker. Now, the caveat is that person will be an oncology social worker who is a member of AOSW, but a lot of social workers, oncology social workers, are members of the organization.
And do I have to worry about whether they’re in my state or not?
That’s another great question. So unfortunately, because of social work licensure laws, and those are tied to individual states, most oncology social workers are licensed more so in their own state. However, there are a number who are licensed in multiple states. And so you should probably start with in terms of any clinical needs. So for instance, if you are wanting someone who is an oncology social worker who could provide therapy or counseling, then that person, their scope of practice would be limited to the state where they’re licensed, which is probably the state they’re located in.
However, if you’re talking about more nonclinical needs, needs that are more so education about a cancer site or education about various community or national resources or more information. For instance, maybe you’re seeking a second opinion. More information about becoming a patient or the patient experience at a given cancer hospital or comprehensive cancer center, then you could call a social worker out of state and talk with them about nonclinical concerns, and that would be within their scope of practice, their ability to be able to talk with you, to kind of do a bit of an assessment and really hear your potential concerns or what your needs are, or that of your loved one related to bladder cancer.
Okay. So I think it might be helpful if we walk through some examples and have you kind of describe what you might do relative to this particular scenario. So let’s start with one, how might you help coordinate care across my medical team?
Oh, goodness. Some of that is going to depend on what the specific issue might be. So I’ll try to give a couple of different examples. So for instance, I’ve had events happen where it’s the middle of the night, there is a patient who, for instance is inpatient, I do a lot of inpatient hospital care. And the anxiety is increasing. They are really struggling, they and their family, around decisions related to potential end of life care. They’re struggling with whether they may continue to pursue treatment or perhaps make decisions related to palliative or hospice care. So there’s a couple of things going on right there. There’s the family discussions and the values and beliefs around what does it mean to potentially stop treatment and begin to actively engage more in end of life care? There’s the actual physiological and physical, emotional or mental concerns related to the anxiety that that patient might be experiencing.
And then there’s the medical care that the person as an inpatient is receiving. Now, how might I work with the patient family and team in that scenario? What I’ve done is I’ve met with the patient and performed an assessment. I’ve talked through their concerns and their values and beliefs. Where are they, starting with where they are mentally, emotionally, psychologically and also in terms of their family dynamic. What are their preferences? What are their values and beliefs telling them about what it is they should do? And how might that differ or be similar to what maybe they believe their family is expecting and how that might be contributing to their anxiety? So first things first. Working with the nurse, the patient’s nurse, getting a good sense of if this person has a history of anxiety, or is this an events specific case of anxiety brought on by this very real decision that the patient and family is facing.
So understanding a bit more from the nurse, the oncology nurse, where the patient is in terms of medical care, their health status, et cetera. And then talking with the nurse and the physician on how best to assist the patient in terms of pharmacological needs and non-pharmacological needs. So I can address the non-pharmacological needs, the non medication based needs. I have strategies and exercises and therapeutic techniques I can bring to bear, to reduce stress and anxiety, to help that person ground more in the present instead of the anxiety that can come from future forecasting, overly future forecasting, to help them resolve any kind of distress they may be experiencing. Because maybe they feel like they’re letting their team down, or maybe they’re letting their family down, or maybe they’re letting themself down if they believe that it’s time to stop active treatment and move more into end of life care.
I can bring the non-pharmacological pieces to that in terms of therapy and counseling, stress reduction, those kinds of pieces, while the other members of the medical team are working to monitor the vitals, to select an appropriate anxiety reduction medication if they believe that that’s warranted. And then those pieces, the pharmacological and the nonpharmacological, can work together so that we can help the patient and their family.
I can talk with the family. I can get their perspective. I can help advocate for the patient’s perspective and the patient’s decisions. Sometimes depending on the patient, there may need to be, to remind the medical team in a very culturally competent way of maybe cultural issues or family of origin issues or religious issues that may come into place, into bearing on the case. So we work together and I can bring the patient’s perspective to the other healthcare professionals on the team. I can help translate the other healthcare professionals perspectives from the team to the patient and their caregivers or family and really help to smooth the process of communication, shared decision-making, so that we both resolve the anxiety and the reasons that are bringing about that anxiety in a way that’s beneficial and again, helps improve the outcomes of that patient. So that’s one case.
All right. So we know that bladder cancer is one of the most expensive cancers, if not the most expensive cancer to treat. So how might you help me as an oncology social worker, either address my costs of care or planning for those costs?
So in terms of the financial piece, addressing the financial needs and concerns of bladder cancer patients, the finances and insurances, the financial component of it is very complex because of the nature of healthcare in the United States. But the work that the oncology social worker and the bladder cancer patient and caregiver or family, the work that we would do together is actually a bit more straightforward. And what I mean by that is depending on, and this is where that bio-psycho-social spiritual assessment comes in, depending on the information that we get in terms of whether someone is working or not working and Americans are delaying retirement until much later, particularly after the last recession. So, whereas before 2008 more folks would assume that with the average age of diagnosis for bladder, that folks probably wouldn’t be working. That’s not actually accurate these days.
And so as part of that assessment, we would be looking for what is their work status? What’s the nature of the benefits they have in terms of do they have private care through their employer? Do they have public insurance via Medicare, Medicaid? Do they have the Medicare supplements? Which supplements do they have? Which parts do they have? What are the deductibles for their various coverages and other benefits there? In terms of work, if they’re working, what’s the nature of their ability to have flexible schedules, to telecommute, to have paid time off or leave without pay? Have they been with their employer long enough to qualify for, or their caregiver been with an employer long enough to qualify for family medical leave act, FMLA? All of these pieces go into understanding the financial and insurance needs of a given bladder cancer patient and their caregiver and family.
And so what we would do is via that assessment, then we would be able to understand what kinds of more general community resources or institutional resources that oncology patients might be qualified for. For instance, American Cancer Society has more general resources available that if one contacts, looks on their website or contacts their toll free number, a lot of areas, the phone number may not be 211. In Texas it is, but kind of the general community resource phone number. Usually it’s three digits. That’s often connected through the United Way in folks areas. So more general community member and general oncology resources versus some of the resources that folks might connect with that they might learn about through BCAN that are specific to bladder cancer. Depending on one’s health status, where they are in their bladder cancer journey, there might be emergency social security disability funds that come up.
And so I say all this to say that the work we do in terms of assessment, helping create a care plan and understanding institutional resources versus community resources that might help out financially, that process is pretty step-wise, but it’s heavily influenced by where the patient and his or her or their family and caregivers are. Taking into consideration also any social resources they may have, who may be able to transport for appointments, who may be able to give material financial aid, practical financial aid in terms of pooling family resources or applying for different medical insurance plans or additional resources such as sometimes foundations broadly will have funds available for cancer patients and or caregivers. And even in the financial piece, looking at home health care, medical equipment and things like respite services for caregivers. All of that is work that through our assessment and working with our patients, our bladder patients and their caregivers and families, that we can bring to bear on helping them, again, to get what they need in order to improve outcomes and their overall wellbeing and functioning.
So I remember when I was first diagnosed and one of my questions that I went through was who do I tell? How do I tell my friends? How do I tell employers and even to some extent family? So if we think about not just the diagnosis, but the treatments that I’m going to undertake and my prognosis, what the outlook is for my particular diagnosis, how might an oncology social worker help me with that?
Part of the diagnosis itself is, and I said it was life altering earlier, but it can also be traumatizing. And so the work that oncology social workers do must necessarily start with the patient. What do they think about this disease? How is it impacting them? What might their concerns be? And then part of what we do clinically is address issues of grieving the loss of one’s perception of self as healthy and cancer free. It can be shocking. It can be in a way traumatizing to people who are living their lives and then they get some signs or symptoms that something’s not right. And then through twists and turns, often the case with bladder cancer, they are rendered the bladder cancer diagnosis. And so working with patients on a clinical level to help with the sense of grief and loss, sometimes guilt or shame.
One of the biggest risk factors for bladder cancer is smoking. And I’m not saying that all bladder cancer patients by any stretch smoked. But I see it a lot with bladder cancer patients who are current or former smokers where there’s a sense of guilt or shame. They might express it as you know, I did this to myself. Or why is this happening, I quit years ago. And so helping to address those feelings and those thoughts that come up that really can erode their sense of self, erode their ability to emotionally cope with the diagnosis, to regulate their thoughts and feelings, their sense of closeness with others, their self-concept, all of those things come into play.
And that’s where we have to start before we can then start working with our patients and helping educate them and work with them on a clinical way so that they can tell their truth and ask for whatever assistance they need based on the relationships they have with certain people, whether that’s coworkers or relatives or spouses and so on. And so it starts with the patient, that work intimately starts with the patient. And then from there, we can work with them on then how they tell their story, how they understand that story, how they understand the potential short and long term treatment and disease effects, how they may have thoughts or feelings of stigma, et cetera, where they then can take charge and be able to tell that story to folks and ask for assistance with problem-solving or getting resources or getting those types of needs met.
COVID is so pervasive in our lives right now, how might a oncology social worker help me or my caregiver navigate the impact of COVID, let’s say at the hospital or in the clinic or at home?
Oh yeah. We have run into that one a lot over the past almost year. In terms of outpatient, we’ve moved in bladder cancer care from having open outpatient clinics with open scheduling where maybe you have a delay due to certain procedures only occurring on certain days of the week. Or, maybe in the case of non muscle invasive, maybe in your institution you only have your infusions and scoping on certain days. We’ve moved from a fairly open system in terms of outpatient to a very closed system that looks a lot more like inpatient in a way. Within patient care, there are controls about, more so than outpatient, at least pre COVID, on who comes in and how long they stay and so on.
So outpatient is now looking a lot more like traditional inpatient in that folks are having to come in, they’re having to test. They may or may not be able to have a caregiver to accompany them. In fact, in a lot of places, only if our bladder cancer patients have maybe some mobility issues or some cognitive issues that mean that their caregivers really need to do extra care related to translating information to and from the healthcare team or physically assist them to navigate the outpatient setting, they may or may not have that person there. Whereas traditionally we’ve actively encouraged people to bring a caregiver or a friend or a relative to these appointments. So COVID has had an amazing impact, not just on how people physically come into healthcare settings as outpatients, but emotionally and psychologically. You’re not talking about spaces where people are traditionally healthy and coming in. Usually they have some illness or some disease that brings them in, unless we’re talking about preventative care.
So in outpatient settings now we have patients who are isolated in that regard. Of course we can’t physically bring as many people into the same space, which means we’re having fewer outpatient appointments available, which is often delaying folks ability to get diagnosed or perhaps have treatment or surveillance on the inpatient side. Particularly, even when folks are having cystectomy, when their bladders are being removed or they’re having, even it doesn’t matter. Even with the various urinary diversions, depending on the health status of the patient coming in, they may or may not be able to have a caregiver at bedside.
And so in a lot of ways, particularly inpatient in a COVID world, our patients are having to rely even more on their healthcare team and healthcare professionals in the inpatient setting, more so than they ever have before for helping provide emotional or psychological support, monitoring and improving communication with the healthcare team or with their caregivers and family members. That requires even more strain on their existing health literacy, their existing patient provider communication skills.
And so oncology social workers are really more than ever before in a COVID world needing to engage with our patients, to assess them, to come up with care plans that really are put front and center the patient’s values and needs to be able to help translate that to the rest of the team. And vice versa, have the needs of the team or the judgment of the team to come in and help all the sides kind of to come to the best decisions possible on behalf of the patients. And so COVID really has been challenging. It’s challenged who we are as a people, who our patients are and challenged them in terms of their resources and their needs.
It’s challenged healthcare professionals, the team, including oncology social workers in terms of trying to hold the line against rationing care. It’s really just been an amazingly challenging time in the last year. But I’m happy to say that I hope the story of COVID with bladder cancer is that by far and large, we were able to get our patient’s needs met, to have as timely and safe diagnosis and treatment and surveillance as possible.
Wow. Thanks so much for your time today, Dr. Goltz.
Thank you for having me. I hope that the takeaway from today is that you have a group of people who love people, we love our patients. We love their families. And anytime there’s a need, that’s what we exist to do. We live to serve, and we would welcome any bladder cancer patient who would like to come and interact with us and just really work towards the betterment of their health outcomes and wellbeing.
Now, in case people wanted to get in touch with you, could you share your Twitter handle or any other information that you want people to have?
I think the easiest thing to do is just to send me a direct email. That’s goltzh, G-O-L-T-Z-H, @uhd, University of Houston downtown, uhd.edu. And I also receive voicemails through email. So you can call my office at (713) 221-8602. I’d be happy to help.
Okay. And just a reminder that if you would 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 Doctor Goltz.
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, advance 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.