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When Cure is Not an Option | Managing Difficult Conversations and Treatments at the End of Life

With Dr. Daniela Wittman and Dr. Elizabeth Wulff-Burchfield

Year: 2023

Managing Grief Through the Bladder Cancer Continuum

Video (14 min) | Transcript (PDF)

How to Ask for Quality of Life Care before the End of Life

Video (35 min) | Transcript (PDF)

Question and Answer about When Cure is Not an Option

Video (12 min) | Transcript (PDF)

Full Transcript of When Cure is Not an Option | Managing Difficult Conversations and Treatments at End of Life

Stephanie Chisolm:

So, welcome to When Cure is Not an Option: Managing difficult conversations and treatments at the end of life, a Patient Insight Webinar from the Bladder Cancer Advocacy Network. Direct to consumer advertising often showcases advances in treatments for bladder cancer, with many patients that benefit from these new treatments. But unfortunately, not all options are curative, and may not improve patient’s overall survival, or even their quality of life. And not all doctors or patients and their families talk about the services that could improve both the quality and quantity of life with patients that might have advanced or metastatic bladder cancer. BCAN is honored to host this important conversation to help you navigate and understand these difficult conversations and decisions and options.

I welcome Daniela Wittman, who is the Associate Professor of Urology and Social Work at the University of Michigan. And Elizabeth “Libby” Wulff-Burchfield, a physician who is a Professor of Medicine in the division of Medical Oncology and Palliative Care at the University of Kansas Health System in Kansas City, Kansas. So ladies, I’d love for you to turn on your cameras, and let’s start having this difficult conversation.

Dr. Daniela Wittman:

Thank you very much for inviting us, and for giving us an opportunity to have this discussion with the participants. So, let me just…

Dr. Elizabeth Wulff-Burchfield:

We’re so pleased to be here with you, thank you.

Stephanie Chisolm:

This is such a wonderful topic. It’s so important, and we really can do a lot to make whatever time somebody might have left, and it could be years, to be the best time, by managing some of the treatments or some of the outcomes from their actual diagnosis. So I’m going to turn it over to you, and I’ll fade into the background for now.

Dr. Daniela Wittman:

Thank you. And I’m hoping you can see my screen.

Stephanie Chisolm:

We can.

Dr. Daniela Wittman:

Okay. So again, thank you very much for being invited to be a part of this conversation. This is me. I don’t have any disclosures. And I want to start out by recognizing that living with cancer is full of uncertainty. There are many ways in which you could say life is full of uncertainty, but in cancer that’s especially true, because diagnosis of cancer brings about questions about what it means in one’s life. Is survival an option? How long? Are there treatments that can cure the cancer, or at least prolong life? What are they like? Will they have side effects? Will they change the quality of one’s life? So there are lots and lots of questions, and in talking to patients about their experience of living with cancer, they kind of live on two separate rails that move forward together. One is the fear of bad things happening, and the other one is hope that things will turn out well.

And when one learns that cure is not an option, that’s a very important moment in that journey, because all of a sudden there is a certainty and it’s a certainty that is not wanted. That is a certainty that nobody’s wishing for, and it requires a lot of adaptation, because what does it really mean? Is it the end of everything? How much time is left? And is it time going to be good? And if one were to say, “Okay, no matter what it is, embrace it and live with it as well as you can,” there’s a process that most people go through before they can get to that place.

So, different people respond to the idea that maybe they will not live as long as they thought differently. It’s, I think, fair to say that cancer brings about the question of loss and death. And, depending on one’s age, depending on one’s beliefs in general, overall health conditions, social supports, and relationship with the treatment team, different people respond differently. But I would say that most people experience feelings associated with grief and mourning, because even just the diagnosis is a loss of health and loss of imagined future. And so it ushers in, the diagnosis ushers in, feelings of loss.

Now there are all kinds of grief that a person can experience. Anticipatory grief can happen. For example, with a diagnosis of cancer, there’s the anticipatory grief, “What is my treatment going to do to my body and to me mentally? How is that going to work?” Reactive grief is a grief that happens to something that’s already happened. So when the diagnosis happens, we react. And then throughout the journey, there may be short, temporary upsurges of grief when the feelings about what’s going on come to the fore.

Dr. Daniela Wittman:

Grief is a very normal response to loss. And so everybody should feel like, if they have an emotional response of grief and mourning to their cancer diagnosis, or any aspects of the cancer experience, that that is very, very normal. One of the things that’s difficult about cancer is that it can be an ambiguous loss, because you really don’t know what the future holds. Ambiguous loss and grief has been coined around soldiers who were missing in action and didn’t return from the war, so that their relatives never felt that they could fully grieve them, because they still held out hope that they would come back. But I think this is a concept that’s very relevant to cancer. Grief can become complicated. It can become complicated when it’s difficult to get past some of the feelings that come along, and move forward from them. And it can become chronic, ongoing.

Here are some of the feelings that are associated with normal grief. Not everybody has all of them, some people have some of them, and everybody can look at this list and see what would apply to me? What do I feel? Do I feel sad? Do I feel angry, anxious, hopeless, helpless? Maybe hopeful? I may be comforted because I have good people around me. Or do I have a sense of a completion, because I’ve lived a long life and I feel like no matter what happens, I’m going to be okay. Any of those feelings can come up, they don’t necessarily all come up at the same time, and they’re all, a hundred percent, legitimate and normal, and anybody who feels them should feel like, “Yeah, this is what goes with cancer.”

We all defend against feelings of loss. So that’s also a normal response. We all defend. Some of those defenses could be denial, like pretending this is not happening. Avoidance, like never wanting to talk about the subject. Over-optimism, this is sometimes problematic when other people react to us and say, “Oh, I’m sure there are really great treatments and you’re going to be okay.” How do they know? Deferral or delay. For example, somebody who may be diagnosed in the middle of a medical crisis may not be able to really deal with it until they get better from that medical crisis, and only then can they begin to cope with what they actually found out.

And sometimes, and now I’m talking about healthcare providers, sometimes healthcare providers defend against the feeling of discussing loss with their patients. That maybe somebody else’s job to talk about it, so they don’t have to. Now, I want to say that, I’m going to come to this in a minute, that both patients, family members, and providers, so all three, I guess, have these feelings when cure is no longer an option. Everybody has those feelings, not just the patient.

Dr. Daniela Wittman:

So I just want to mention that throughout survivorship, there are different times when people have feelings of loss. Obviously at diagnosis and during survivorship, this could be functional losses, losses of body parts, or it could be the way that one has to be in the world differently. Loss and grief are definitely a part when a recurrence occurs, and certainly during the advanced stages of cancer. And so certainly, it comes up when treatment is no longer an option.

So here is why both patients, family members, and providers have trouble. We manage separation and loss from the time we are very, very small. Little children have to learn how to separate from their moms and their dads to increasingly go out into the outside world. And I think any one of you who has children will know that children have to master that. That’s because it’s a part of attachment, a part of the human experience, and most beautiful part of the experience is attachment. We are attached to each other, we love each other, we rely on each other. And the price of having that kind of special, special relationship is that when that relationship may end, we experience feelings of separation and loss, and those feelings I described in a previous slide.

Previous experiences with separation and loss can help us understand how we react in any next situation. Somebody who’s had a lot of losses may be either strengthened by them, and know how to cope, or they may feel overwhelmed because it’s one too many. But everybody comes to the experience of loss when cure is no longer an option via their own template for how they’re going to react. And if you think about it, the end of life is the ultimate separation and loss. And so people on both side of that relationship, whether it be the patient and family member, the patient and healthcare provider, or family members, healthcare provider, everybody has to face that feeling.

We know that those are very difficult conversations. Research has shown us that healthcare providers are not really very good at discussing it. And here I’m not talking only about physicians; it’s true for nurses, it’s true for social workers, it’s very difficult for everybody to talk about something that is ending, where treatment is no longer an option, and people have to look at the other side.

And so, there’s a tendency to maybe want to postpone it, or to not discuss it at all. But of course, when one doesn’t discuss it, we miss the opportunity to express and share feelings, which actually when they are shared and expressed, increase intimacy and a feeling of connectedness, which both the patient and everybody around them finds really very positive. It’s also a lost opportunity to plan. Some people like to plan for whatever they’ll do while they’re still living. Some people actually like to plan their funeral. And there’s an emotional intimacy that can really enhance that period of time, and so it’s very, very useful. And not just useful, it can be very enhancing to not avoid these difficult conversations.

And now I’m going to turn over to Dr. Wulff-Burchfield to talk about palliative care, and its role in the context that I just described.

Dr. Elizabeth Wulff-Burchfield:

Well, thank you all so much. I really appreciate all of your time and attention, and I’m so glad to be able to build on what we just all heard, which is really profound and so important, so, so important to the human experience. So I’m a palliative care physician and a genitourinary medical oncologist at the University of Kansas. For complete disclosure, I am an assistant professor and I aspire to be a full professor one day, but I don’t have any… Let’s see, don’t have any disclosures particularly relevant to this program today.

But first I’d like to just talk about the idea… I’m going to spend some time talking about living well with cancer, and what that means for all parties involved, how to collaborate in achieving that outcome, and why I believe it should be the standard of care. Included in that, we’re going to talk about the ways that palliative care as a discipline can help promote that worldview and that approach to care. So first, for context, something that I’ve reflected on, given that I wear both the hat of palliative care and medical oncologist, are that for most of the human history when medicine was a profession, there were only a couple of outcomes that could come from cancer. And one of those outcomes was that the cancer went away, all the way, and stayed away, and one of them was that the cancer was rapidly fatal. And it really is a very modern experience to be able to live with cancer.

Dr. Elizabeth Wulff-Burchfield:

So treatments, there’s been such incredible innovation, and continues to be, and will continue to be, incredible innovation with systemic therapies that I have the privilege of prescribing. And a lot of that has happened for persons who have advanced cancer. We do suspect that a lot of those are going to be translated earlier into care. But for right now, a lot of that is happening for individuals whose cancer is not expected to go all the way away. And what this means is that people are able to live with cancer. But this is new, this is really new. And, as many people participating in this webinar could attest to, I think the broader culture, at least in North America, really understands the old, outdated paradigm that people either were cured of their cancer or died from it rapidly.

And I think the idea of living with cancer is not well understood. And while, even though we know that folks who are living with cancer are growing, thankfully, I see that in my clinic every year, that I get to spend more time with my patients, it’s clear that we don’t really understand as a field, a medical field, and in terms of our resources and research, what people need who are living with cancer, compared to folks who have the other needs. However, one conclusion does seem pretty clear, and that’s supposed to be a crystal at the bottom, but it’s not the clearest crystal. But what I will say, what is crystal clear, to use this phrase, the quality of individual survivorship when they’re living with cancer must be elevated as a co-primary goal with all of their cancer outcomes. So we must consider people living well to be as important as living as long as possible.

So when I think about communication, when it comes to advanced cancer, unpleasant symptoms can go along with cancer, and that’s a very common experience for many people. We know from research that a majority of folks who are living with cancer have at least one unpleasant symptom to deal with, and a large minority have more than five that they’re carrying with them. Folks who have to be hospitalized have more burden from their symptoms, and generally younger adults tend to report more symptoms than older adults. I can’t speak to pediatric patients as well, because I’m an adult oncologist. And even though some younger adults do seem to have a greater symptom burden than older adults, we don’t think that there are any clear demonstrated differences between people who identify as women and people who identify as men.

But we also know that these unpleasant symptoms are associated with undesirable outcomes, like worse quality of life, people who are so burdened by their symptoms that they can’t get up and do things for themselves and live their life fully, as well as more distress and fear from the people who love them. So essentially, the more symptoms people have, the worse their quality of life is, and the worse it is for the people who love them. And also fear of these symptoms sometimes can be a barrier to people, can prevent people from seeking care for their cancer due to fear that this could happen to them, and kind of that avoidant tendency can take over. So I do feel really compelled to say that everyone who’s diagnosed with cancer deserves to live well with cancer. And a really important way to help accomplish that is to avoid symptoms, to mitigate symptoms that might go along with the cancer or the treatment.

Dr. Elizabeth Wulff-Burchfield:

So in terms of us thinking about quality of life, when it comes to research, and even, to some degree, clinical practice, clinicians and researchers have some more technical ways to go about assessing quality of life for the people on the other side of our stethoscope. However, for the person who’s receiving the care, they don’t need to follow… Someone in that circumstance, most of the time, is not going to need to complete a questionnaire to understand how their quality of life is every day. But it’s a nebulous concept. Some people feel really comfortable assessing themselves and trying to take their own temperature and think, “Well, how is my life?” But I think sometimes that’s challenging for folks, especially those who have lived their life in such a way that they were taught to, and praised for, and have succeeded by pushing through things, forcing their way through pain or sickness and things like that in the past. It can be really uncomfortable for folks who’ve lived that way to stop, and pause, and take an inventory.

So a few questions that I think are important to consider when assessing one’s quality of life are things like, “Are you having more good days than bad days? Or do the bad outnumber the good?” And furthermore, “Is there a trend? Did you start with more good than bad, and now it’s the converse?” I think that’s an important question. Another set of questions I like to learn about folks is what sort of activities, interactions, what sort of ways bring you joy, fill your cup? And are there things getting in the way of you doing those things? So if someone really likes to work on model trains, does pain get in the way with that? Does fatigue get in the way with that? Same thing could be if someone has friends or family they want to spend time with, do they have the energy to be doing that? Or are there factors that are getting in the way of them living that joy?

Another set of questions would be, “Are there essential activities or functions that you, as an individual, must have to think that you’re living well?” So for example, for some people, I’ve had folks say, “If I can’t go out for a run in the morning, my life would not be a good quality to me.” And I’ve had some folks who said, “Even if I never got out of bed again, as long as I could interact with the people I love, that’s okay with me.” It really varies, and needs to be defined individually. And then also when it comes to people who are in the midst of struggle, who are dealing with symptoms, and a really important question that I try to prompt people to ask, and many times people come in to me having answered for themselves, “If things never got better, if this was the best that things got, would that be okay? Should we be promoting your current quality of life to last as long as possible?”

So in thinking about quality of life, as a clinician, while I do interact with my patients very closely, and dozens of people a week, I know that I must start from my own authentic perspective, which is that in adult medicine, most of us clinicians are going to operate under the assumption that things are fine unless we hear from somebody, or unless we hear or observe things to the contrary. We can always check labs and do imaging, but in terms of how someone’s living, if they’re not calling me between visits, if they’re not sending me messages between visits, or if, when we are talking, they don’t indicate that things aren’t going well, if they physically look the same and they’re exam and labs look the same, I may not know. I may not know they’re struggling or even suffering.

So I think the truth of the matter is that all of the technology that we use in clinic really isn’t very successful at showing us the real patient experience. And a lot of times I think barriers that come about, with regard to my patients communicating quality of life concerns, relates to fear that I will take away the treatment entirely, something perhaps that they are very invested in because they want to live as long as possible. Most of the time that’s not indicated. In most circumstances, we can mitigate toxicities, sometimes with other medicines or procedures, sometimes by adjusting the doses of treatment, sometimes by adjusting the schedule of treatment, or even just taking a break. And that doesn’t mean that we’re closing the door on longevity, or closing the door even on that individual treatment.

Dr. Elizabeth Wulff-Burchfield:

But what I would just say is we have not perfected telepathy. And I sometimes joke with this about my patients and just saying, “I can practice telemedicine, but I can’t practice telepathic medicine.” So if someone is struggling, when I’m meeting the folks in my clinic, one of the first things that I try to emphasize is that I genuinely want to know, and need to know, how things are going to help them in the best way possible. And so, if it’s something that I need to know, then it probably needs to be told to me, just in case I don’t pick it up otherwise.

I have a couple of thoughts about what I have observed, again, on my side of the stethoscope, in terms of what I think helps communication about quality of life for my patients and their loved ones and their support people. So I think it’s important for people to take some time and space to think about what they think about their daily life, and how their overall wellbeing is, before coming to a conversation, because it can feel really uncomfortable to be put on the spot. I would also say having time for a face-to-face visit with their treating clinician is really high value. I think, again, the telephone is a really important invention, we use it quite a lot. Same thing with MyChart and other modes of communication, but it’s hard to beat some sort of way for me to look into my patient’s eyes and for them to look in mine when we’re having these important human moments. And that could be through telehealth. I think either of those options are often better than just trying to piece it together with MyChart or other patient portal messages and things like that.

The other thing that I’ve observed sometimes is helpful is occasionally I’ll have folks who will send me a message before a visit and will say, “Hey, in case I get swept up in the moment, or in case I get stressed out from traffic tomorrow, there are a few topics that I want to talk about.” To bring up quality of life things, to make sure that I’m aware we need to make space and I don’t run the risk of moving the visit along, and ignoring, failing to make space and time for something important. And I would also just say having a support person there goes a long way, and I would strongly recommend considering that.

A few other thoughts that I think are worth considering are that when my patients and their loved ones communicate with me that they have quality of life concerns, some of the things I think help that communication are to keep it really simple. And it’s not that people don’t want detail, it’s just that I think in clinician-directed communication, we are often taught to start with a warning shot and then a headline. And I think because, as we were hearing before I started talking, physicians, providers, nurses, social workers, and other clinicians have their own journey along with the people they’re treating, their own grief or sadness of someone struggling. And so I think assuming that the person on the other side of the stethoscope from you is going to need the same courtesy and the same preparation that we give, I think, is a great starting place.

So I think starting with a warning shot by saying something like, “My main concern I wanted to talk about today is my quality of life or my overall wellbeing. I’ve been feeling worse, and I want to know what can happen to help me feel better.” And then giving that person a moment to take it in, and then ask questions, because they will ask questions. They’re not just going to say, “Okay, thank you,” and walk out the door. Anyone you’re working with will be invested in you.

And other options would be to say, “I’ve been struggling with side effects since I was here last, I don’t want to stop treatment, but I want to see what’s possible to make them better.” Again, I think giving that kind of warning shot, “I’ve been struggling,” and follow with a concise summary, that can be enough to spark a rich, and important, and successful conversation. So I would just say treating clinicians, we need all relevant information to do a good job, and most of us are people who want nothing more than to help others live well. So I think quality of life is always relevant to this, there’s always a place to talk about that.

Dr. Elizabeth Wulff-Burchfield:

Knowing that we’re all human, we all bring our own experiences, baggage, attachment issues, all those sorts of things, sometimes those conversations are tough, and emotions can run high, and don’t always feel great. And this can be the same if my patient were to bring up to me that they’re struggling, it’s not impossible that I could have an emotional response. That happens sometimes, and I think it’s important to be prepared that, no matter how much someone cares for you, they could have their own experience that could lead them to have difficult emotions. So I also think it’s important to recognize that when talking about quality of life, and particularly if we’re not meeting the standard we need to in terms of quality of life, everybody in the conversation can have difficult feelings about that. But clinicians can feel that they’re failing their patient by not knowing about it, by not being aware, and they can feel sad sometimes, even defensive. And I think, often, my patients and people undergoing treatment and their loved ones can feel a sense of failure or fear abandonment.

I would say also it’s important, I have one observation that I feel strongly about, that a lot of the field of oncology in modern years has revolved around a culture of non-abandonment, and emphasizing not giving up or giving in and those sorts of narratives that can lead to, sometimes, an oppositional response. When people express, “I would like to know what can happen to make my symptoms better.” Sometimes an immediate response from a clinician is, “Well, we can’t stop treatment.” I think it’s because of that cultural underpinning.

I would also say that, and this is my personal opinion, and I want to make sure everyone who’s listening feels respected, but I don’t always think that the fight or battle narrative for cancer, I don’t think that’s always productive. Sometimes I think it leads people to feel like they’re losing a battle, losing a fight. And I certainly feel strongly that none of my patients are losers. And again, that can make for difficult conversations sometimes. But it’s always, again, knowing all of that, I do think it’s important to be willing to try again if possible, because these are important topics that need to be addressed.

Sometimes we do reach an impasse in communication. And what I do want to emphasize is that I actually think that that clinical relationship, it can still be successful, it can still be therapeutic if you get in additional help in fostering that communication in a more successful and fulfilling way. And I believe that palliative care is the ideal resource to provide another perspective, and another mode of communication. One way to start about that, and in addition to working with palliative care, talking to a nurse on your team or a social worker can help as well.

In talking about palliative care, palliative care also is sometimes called palliative medicine, is specialized medical care for folks who are living with a serious illness. Cancer is always serious, and so this is appropriate for people across the trajectory; at new diagnosis, getting curative intent treatment, dealing with symptoms, or advanced illness. And palliative care focuses on providing relief from symptoms and the stress of illness, regardless of what that serious illness is, and in this case, we’re talking about bladder cancer, of course, but this exists with other things like heart disease, neurologic disease, et cetera. And the goal of palliative care is to improve and maintain a great quality of life for patient and their loved ones.

Palliative care is conducted with an interdisciplinary team, including doctors like me, nurses, social workers, chaplains, child life specialists, advanced practice providers, and so much more. And I would emphasize that in palliative care, we say that it is for any age and any stage in a serious illness, and it can, and should, be provided along with curative intent treatment when it’s needed. That may not be the focus of this webinar, but it still is important to know.

I do think, often, folks conflate palliative care and hospice. I know many, many, many clinicians who continue to struggle with some of this, and have a lot of fear about palliative care because of some associations they have with hospice and not, and wanting to make sure that hospice is introduced at an appropriate time. So some things, there are a lot of similarities between palliative care and hospice. Again, any age and any stage for palliative care, and hospice is for any age of person, but it’s really intended for folks who have a limited life expectancy, and aren’t pursuing treatment of the underlying medical problem.

Dr. Elizabeth Wulff-Burchfield:

Palliative care is largely conducted inpatient and in clinic. There is some home palliative care available, that’s really variable. Gosh, that could be a whole other webinar unto itself, because it’s kind of complex. But hospice is actually primarily undertaken at home, wherever that person’s home is. If they live in a facility, or if they live in a private home, or with other people, then that’s where hospice is primarily conducted, although there are inpatient hospice or hospice houses sometimes where people need to get care. And then outpatient or palliative care is paid for by insurance, just like any specialist, like if you see a dermatologist or a cardiologist, versus hospice is a comprehensive benefit that includes all medical care, equipment, medicines, and care at the home or in a hospice house in order to help someone live well.

And the other things that are important to remember are that palliative care can and should be given alongside routine medical care, even for the illness that the person is dealing with. But in hospice, individuals need to focus… Hospice is meant to be someone’s entire medical team, and it’s really intended for people who don’t have conventional treatment options, or don’t want them. So it’s important to differentiate. I think of them as being opposite ends of the same spectrum.

And palliative care in advanced cancer has a lot of benefits, including improving symptom control and quality of life. And these benefits are preserved whether folks are getting this in person or through telehealth. Also, the benefits are there whether someone’s seeing a physician, advanced practice provider, or a nurse. And I would say that communication is a central piece of palliative medicine. And that’s actually, in truth, in my own training, I can tell you, most of my training was really in communication. The medication part was much easier for managing symptoms, but communication is really, really the thing that takes the most time to learn, and the most expertise to master. So for all of these reasons, I would say that palliative care is the ultimate resource in pursuing a life with a good quality when dealing with an advanced cancer.

I put this little bird here because, and we often think that, and what the research bears out, is that working with palliative care earlier really pays dividends. But some important tasks that palliative care accomplishes that I want everyone to know is that palliative care clinicians are experts in looking at goals of care with folks. Sitting down across from another person and saying, “What gives your life meaning? What makes your days sweet and joyful? How can we make that a reality for you?” That’s looking at goals of care. Symptom management, dealing with unpleasant symptoms that people could have from cancer or treatment. In the setting of other illnesses, that would of course mean symptoms that might go along with that other illness. Advanced care planning, which is really important task that all of us should be doing without cancer diagnosis or with it, but palliative care clinicians are experts in helping with that. Communication, as I said.

And then finally, timing really does matter, because historically, palliative care was undertaken as an alternative to treatment of the underlying illness. But all of the research of the last decade tells us that working with palliative care in a concurrent fashion is really where the gold is. That’s really what helps people for the longest amount of time, and building that relationship early really creates a foundation of trust and mutual respect that you can build on later when it comes time to undertake often difficult or challenging medical decisions as time passes.

Dr. Elizabeth Wulff-Burchfield:

Some things that palliative care does not do, that I want to emphasize; palliative care does not shorten how long people live. Not at all. In fact, multiple studies have shown that people can live longer if they work with palliative care. And we think a lot of times that’s because people’s symptoms are better controlled, so they can stay more active and strong. And also, if their symptoms are under better control and they’re more active and robust, they can get more treatment, and then that treatment helps them more.

I would also say that, in spite of the fact that palliative care does not shorten how long people live at all, folks who do work with palliative care often receive less unhelpful care at the end of life. If someone is passing away from cancer and is in the dying phase, putting that person on machines will not, in any way, help them live longer, or at least not a quality of life that almost anybody would find meaningful. So avoiding overly aggressive and burdensome care at the end of life is really important, and it’s considered an important marker of high-quality care. So much so that the American Society of Clinical Oncology has included it as a really essential quality metric that programs are evaluated on. And so I would say that when folks are working with palliative care concurrent with their medical care, they get additional support, so do their loved ones, and then, if and when they need hospice, they’re able to get it with few barriers.

A few more words before I turn it back over to my colleague, how to connect with palliative care. This is a question that I get quite a lot, and I will admit to you that looks different depending on where people live, the setting in which they spend their days. But some general principles that I wanted to share, that asking a primary care doctor or oncologist for a referral to palliative care is a great step. And the reason I would recommend that is because what it can allow is for whatever resources go along, kind of are most closely partnered with, their treating clinicians are what they would likely refer to. And there are advantages there, because it can help foster communication between the different clinicians.

I would also say getpalliativecare.org is specifically designed to help people find palliative care near to them. And if there isn’t palliative care very near to them in an outpatient setting, because of telehealth, that’s more readily available now, although I know still a source of disparity, many of my patients who live in rural areas do not have Wi-Fi and can’t actually do telehealth very easily. However, it does help. So if someone lives in Wichita, Kansas, and I’m in Kansas City, I have a license in the state, and it might be possible for them to see me for palliative care. Inpatient, if someone is hospitalized, talking to their inpatient team, they’re sort of the gatekeepers for any consultations, whether it’s with dermatology or palliative care, et cetera. But again, that’s something that often a nurse on the team can help to facilitate, if the physicians or advanced practice providers aren’t quite there.

And to finish at home, I would just say home palliative care resources are variable. And there isn’t great home palliative care everywhere, and I’m sorry to say that. But a really wonderful website that’s based in really high-quality medical data, and is used readily by palliative care clinicians of all stripes in all places in North America, is prepareforyourcare.org. It includes state-specific booklets that can help folks walk through an advanced care plan, and also videos that help coach people in both Spanish and English about how to go about raising the topic of advanced care planning, which can lead to other discussions.

Other things about how to connect, are that palliative care, if it doesn’t feel right for you or for your loved one, you can still learn about it. You can learn about it getpalliativecare.org just to learn more about the field, so that when, if it might be appropriate at some future time, you would feel educated. Also, I do think that Gilda’s Club sometimes has counseling and support, which is not the same as palliative care, but can be helpful. And I do think that CancerCare can be helpful. Certainly BCAN is one of my most revered recommendations and resources, and can provide incredible support to the patients who are dealing with bladder cancer and their loved ones. And while I didn’t list that here, the only reason was because, to me, it feels so implicit that for me to want to partner with BCAN is because their mission is fully aligned with that of medical oncology and palliative care, and I completely emphasize that this is an essential resource.

Dr. Elizabeth Wulff-Burchfield:

Last warning I’ll give is that there’s, as I said, still a lot of misconceptions about palliative care, including among medical professionals. It can sometimes lead people to say, “Oh, it’s not time for that, you don’t need that, we still have treatment options.” And I say, “Do not be discouraged.” I might be discouraged if I encountered that from someone I trusted, and if I’d gotten up the courage to bring up palliative care, then I might feel discouraged. But what I would tell you is that that means that you actually get to educate that person who you’re talking to, and it’s okay to ask for a referral anyway. And also, one thing that I learned in my childhood as an avid Sesame Street listener and watcher, was over, under, around, and through. If this person is putting up a barrier to you, that’s probably due to their own misconceptions or their own baggage, go over them, under them, around them, or through them.

You can self-refer, that’s kind of going around or through. You can talk to their nurse, you can talk to another clinician that you work with. So I would just say we all need the support that we need. Palliative care is a great source of that. And if people meet resistance, it’s not about them, it’s about the person who’s putting up the resistance.

So as I conclude, I thank you all so much and I really look forward to rounding out our discussion. But I would just say that everybody who lives with cancer deserves to live well. Everybody, everybody. And palliative care can often help that by managing symptoms and providing meaningful support, and getpalliativecare.org is a great starting place to help anyone get access to palliative care, at least in the United States. Thank you so much.

Stephanie Chisolm:

Oh my gosh, thank you both. That was a phenomenal program, and will be a phenomenal resource. I know, Daniela, you have a few more slides, and then we can get to a couple of questions.

Dr. Daniela Wittman:

I’m muted. Can you see the slide?

Stephanie Chisolm:

Yes. Now we can hear you too.

Dr. Daniela Wittman:

Okay, okay. So I just wanted to tell everybody who’s listening that I looked up the definition of the word “palliative”, and it means soothing, alleviating, calming, which means those are the interventions that will make life better, that will make life more livable. And that is something that everybody’s entitled to, especially if they’re dealing with cancer. And you just really heard a really nice summary of what you can access through that kind of care.

So one of the things that comes up every now and then, what do I do? What does a patient do when the family or the doctor won’t talk about it? So there are things that can be done. First, it’s really helpful to team up with somebody. Don’t necessarily approach this by yourself. Team up with a friend, family member, a peer who has bladder cancer, social worker, counselor. Have a discussion and say, “Please support me in bringing it up to my family or bringing it up to my doctor.”

And then once you decide to do that, let the family or the doctor know in advance that you want to have that discussion so that they can get psychologically prepared for it. You might want to write down what it is that you want to talk about, because in the heat of the conversation, you may not think of all the things that you want to cover. And expect to have feelings about it. And others will have feelings about it, and you can let them know that it’s okay. That when people feel sad or defensive, it’s usually the reacting to their own sense of loss in that situation. And all feelings, more or less, are acceptable, as long as people recognize that they are a reaction to a difficult subject. And it doesn’t have to be only one conversation, it can be repeated as people get more uncomfortable with the topic.

I would say don’t back down if others say, “Don’t worry, you’ll be okay,” or, “This is not the time,” or, “We’ll talk about it at a later stage.” If you feel like it’s your time to talk about it, you have a right to talk about it. And so again, get support from whoever you trust and approach it again, you can disagree, you can stand up for what you think is right for you.

So when people are coming to a place where treatment is no longer an option, there are many things that they can decide on, and that can make that period of life actually really rich. One would be to certainly allow one’s feelings to flow, but the other thing would be to actively work with one’s family, or with friends, on what one still wants to do, saying goodbye, even planning a funeral and memorial service. Sometimes when there are challenges in the family because people don’t want to talk about it, don’t want to plan it, but you do, a social worker can be helpful. And to the degree that it’s possible, focus on the quality of life in the present, so that you can have as many good experiences and meaningful activities all the way to the end.

So I would say allow for grief to happen, it’s a natural response. Definitely stay connected to your loved ones and to your healthcare team, and let everybody know what you need, and what you want to happen. And that would be a way to take advantage of palliative care, and of having as rich a life as possible all the way to the end.

Here are some resources that I have put here as well, which will be available for you to look at when you get these slides. Some of them will be probably replicated. But anyway, thank you very much for your attention, and we look forward to your questions.

Stephanie Chisolm:

Again, this has been a phenomenal program, and you both brought up something very important. The concept about a social worker is one, that people don’t know how to find one. But I do want to just let everybody know that we started this month, with CancerCare, a special bladder cancer support line, and it is staffed by the social workers in New York that are really medical oncology social workers. And if you call 833-ASK-4-BCA, which is basically “Ask for Bladder Cancer Advocacy”, then you are speaking up for yourself or for your loved one, and I encourage you to use that line. It’s free of charge, and they’re available during regular business hours in the New York time zone. So leave a message if you can’t reach them, or if you’re in a different time zone. But they can help with a lot of things, and some of it can be related to “What do you do when cure is not an option?” So thank you, Morgan, for putting up that slide.

And you both explained so much, in terms of the differences between palliative care and hospice, and identifying the emotional challenges. There are so many, as you pointed out, Daniela. A caregiver might be saying, “Come on, keep going, keep going!” And the patient is saying, “I’m sick and tired of being sick and tired, and I’m ready to just be at peace and enjoy what time I have left.”

So from that perspective, you mentioned so many wonderful things. I hate to say, how do you bring that up again? Because so many people are like, “I just don’t know.” And you gave so many wonderful suggestions on how do you bring that up. And I can’t even think of a question now specific to that. But Libby, you pointed out that palliative care can be at any time, it’s not just for hospice. And thank you for providing those resources for how do you find it, because one of my questions is always, “How do you find it if you’re being seen in a community practice, and that oncologist, medical oncologist, does not have a link to a palliative care expert?” So you gave the answer already, which is wonderful.

Dr. Elizabeth Wulff-Burchfield:

To answer your prior question a little bit, I did just want to say that when folks are having… If there’s conflict or just discomfort between the person with the illness and their loved ones, and not everybody is wanting to participate in the conversation, it’s perfectly reasonable to ask a medical team to help with that. Or again, that could be a physician, nurse, advanced practice provider, social worker.

So any of us in practice would encourage, if I have patients whose loved ones are just not comfortable, and/or are saying, “No, I’m not willing to engage in that conversation, I can’t go there,” or something like that, it’s okay. If my patient came to me and said, “My husband or my spouse is just not… He doesn’t want to talk about it, and I need to talk about it.” Then I would be very honored to either be the person to talk to that patient about it, or to say, “Can I try and help facilitate a conversation? Or we could have a conversation, then I could summarize it and present it to this person so that you don’t feel like, quote, “the bad guy”.” The bad guy is the cancer. Wanting to talk through things is a normal human need. So I think that’s something that the medical team wants to help with, if we can.

Dr. Daniela Wittman:

Okay, if I can just add to that, sometimes the members of the medical team, whoever they might be, can help the family member understand what the patient’s going through. Because I think that as people are getting tired of their treatments, and of their fatigue, and of their pain, family members are focused on wanting to have that person around as much as possible, and so they want them to keep on going. I think that the healthcare providers can provide some information about what happens inside of that person’s body, and how that may make them feel, engage the family members’ imagination in a way that the patient may not always be able to do, in the sense that they’ve already said many things about how they feel, but somehow they need a little bit of authentication from somebody else that that is really true. And it’s not really about they’re wanting to abandon their family members, but things may have become unbearable.

Stephanie Chisolm:

Mm-hmm, absolutely. Well, there was one question in the Q&A box that I’m not quite sure of, because I’ve not heard this term before, but I know that you can use a doula to help guide through the birth process. But somebody asked a question about a death doula, or end-of-life doula. Do you have any information on that, Libby?

Dr. Elizabeth Wulff-Burchfield:

Well, what I would say is that the terminology depends, it differs a little bit across the United States. And I will admit, I don’t have a great deal of knowledge about this, and I really don’t have a great deal of knowledge about this outside the United States, or at least North America. I would say that this is a little bit more nebulous than someone who’s going through labor and delivery, because the dying process is often more protracted than how long it takes for a baby to come into the world. But what I have learned is that some of the folks who know the most about that are actually hospice agencies, and folks who work at hospice agencies, because if someone wants to work with either a volunteer, so sometimes these are volunteers, and sometimes they’re private duty medical people, either a nurse or a social worker, and sometimes even, I think, chaplain type individuals, who can help physically be present with a family for additional support, and to help put things that are being observed into context, for example, symptoms.

I would also say that, in my opinion, the entire hospice team effectively accomplishes all of the tasks that a death doula would do. Now, one thing that’s a little different is that sometimes in the hospital, for example, where I trained, I’ve spent some time at Vanderbilt, which is a wonderful medical center in Nashville, Tennessee, and we had volunteers who spent time at the bedside with folks who were going to die in the hospital if they didn’t have loved ones. And so that’s a little bit of a different role. But really in reality, the hospice medical team, because of the interdisciplinary nature and the varied expertise, really accomplishes all of the tasks. It’s just sometimes if people want someone physically present, then arranging that, the people who know the most about it in a given area would come from a hospice agency.

Stephanie Chisolm:

Yeah, it’s taking so long to just get people to think about palliative care as an option. So I’m sure this is going to grow if this becomes something that’s really effective. So I think that that that might be something…

Dr. Daniela Wittman:

Can I just…

Stephanie Chisolm:

Mm-hmm?

Dr. Daniela Wittman:

Can I just add also the concept of a doula for childbirth is a wonderful, wonderful idea, and the people who do it often have some training, because one of the things that you want to make sure is that people are not imposing their own views on the person who is having the baby, that they’re really there just to comfort them and support them, and that they understand the process and can assist the healthcare providers, whether it be a midwife or a physician who’s birthing the child.

I think the same would have to be true for a death doula. It’s probably a really terrific concept that is very novel, in a way, that could develop. But again, it’ll be just important that that person understands what being a supportive person is, in the sense of not imposing, and being very comforting, and assisting the people who are providing healthcare, medical care, in the context of the family.

Dr. Elizabeth Wulff-Burchfield:

Mm-hmm, well said.

Stephanie Chisolm:

Mm-hmm, absolutely. Well, I don’t really see a whole lot of questions that haven’t been answered. When is a time for formal palliative care, not just an interaction with a primary doctor or specialist, but with a palliative care team? I think you covered that in your talk, if you have any other comments about that?

Dr. Elizabeth Wulff-Burchfield:

Well, a lot of times we think about it in terms of… Truthfully, primary palliative care is what oncologists and palliative care physicians and neurologists and other clinicians are doing to talk about goals, to manage symptoms. But I would say that those primary palliative care tasks are going to be a part of standard medical care. But if at any point someone feels like they could use a little bit extra support, symptoms could use a little bit more tweaking, or just the nature of conversations needs to be a little bit deeper or longer, then I think just my general experience has been that if someone asks themself, “Is it time?” It’s always time. Intuition is very, very helpful in a circumstance like that. And again, if someone meets with palliative care and it doesn’t feel like a good fit, they could pull back and then circle back at another time. It’s kind of a very low-risk endeavor.

Stephanie Chisolm:

Right. And I loved your idea earlier of getting an advocate to help with that process. If somebody, maybe the patient’s saying, “I’m sick and tired of being sick and tired,” or the caregiver is thinking, “I can’t let them suffer anymore,” but the patient’s like, “No, no, no, keep going.” Whatever. If they’re not on the same page or not having that conversation, I loved your suggestion of enlisting somebody to help talk it through so that you can present this. And if it’s not a friend or family member, then it’s obviously bringing that doctor into the conversation to really talk about the goals for the time you have left, and how you want to spend your days. I think that’s really critical. I think someone…

Dr. Elizabeth Wulff-Burchfield:

I agree. I think any discord between patients and loved ones is a really important time to involve palliative care. Sorry about that.

Stephanie Chisolm:

Absolutely. But what you have done is such a phenomenal program, that you literally anticipated every question that I have written down on my notebook, and there haven’t been that many questions really submitted. So I want to thank you both for an absolutely useful, wonderful, warm… I feel really good that this information is now out there, because nobody talks about this, and it’s just one of those things; yes, doctors may offer more treatments, but if it’s not quality of life, if it’s just prolonging misery, but it’s not offering any cure, how do you make that time better? How do you give parents a chance to talk to their adult children or their small children, or give that grandparent time to talk to their grandchildren in a way that they’re not in pain, and they’re not medicated to the point where they can’t talk the way that they feel? And that’s such an important gift to be able to do that. So thank you both. Any last comments before we sign off?

Dr. Elizabeth Wulff-Burchfield:

Oh, I just want to thank you for hosting this important discussion. I think this can be difficult subjects to address, but they are an extremely important part of living, and to make sure that it’s well, and to have a comprehensive picture. So thank you for being willing to host this important discussion, because I’m sure it’s on many people’s hearts.

Dr. Daniela Wittman:

And I want to say that this is really a quality that BCAN is famous for, which is that you bring up topics that other people are not talking about, and so patients can turn to BCAN for such a gamut of support, information that it becomes an incredibly important resource in bladder cancer. Thank you.

Stephanie Chisolm:

Thank you both. And I thank everybody for joining us. And again, I’d like to thank the EMD Pfizer partnership for supporting the Patient Insight Webinar series. Thank you all. Remember that you will be getting a short survey, please put in your opinions, we really would love to give some feedback to the presenters, and also just let us know how the program was for you, and we will see you on our next program, which is coming up in March. Thanks so much. Bye.

Dr. Daniela Wittman:

Bye-bye everybody.

Dr. Elizabeth Wulff-Burchfield:

Thanks.

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