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Note: Transcripts of Frankly Speaking About Cancer Radio Show may contain errors. We strongly encourage you to listen to the audio of Frankly Speaking About Cancer Radio Show. Listen to the Full Episode.

Good afternoon and welcome to Frankly Speaking about Cancer with The Cancer Support Community. Your host is Kim Thiboldeaux, President and CEO of the Cancer Support Community. This hour is designed to inspire, inform and to help you live better with cancer.

Now here’s your host Kim Thiboldeaux.

Kim: Welcome to Frankly Speaking about Cancer, an internet radio show that focuses on informing and inspiring people to live well with cancer. I’m Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community and Gilda’s Club have united to become The Cancer support Community, one of the largest providers of cancer support in the United States and around the world.

Our services are offered at more than 100 locations worldwide and online at www.cancersupportcommunity.org. For people facing a cancer diagnosis, the path to completing cancer treatment can be long and difficult. The goal of course is to eliminate the cancer and get back to normal. However for patients with advanced or Stage Four cancer this goal may no longer be feasible. Patients face many tough decisions throughout the course of treatment but one of the toughest decisions is deciding when it’s time to stop treatment.

In Part1 of this two-part series on patient decision making we’re discussing making decisions about end of life care and the importance of patient provider communication. We’re happy to welcome back today’s guest Charli Prather to our show. Charli has been one of the amazing Cancer Support Community helpline counsellors for more than five years.

Charli received her Masters on Social Work with an emphasis on health and began her career as a hospice and palliative care social worker more than 20 years ago. Prior to working with our helpline, Charli was the Program Director at our affiliate Cancer Support Community Greater St. Louis.

In her private practice Charli utilizes mindfulness practices for coping as well as acceptance and commitment to therapy to assist those facing decisions when diagnosed with cancer and other life threatening illnesses. She also teaches adaptive and trauma focused yoga in her community. Charli herself is two-time cancer survivor. Welcome back to the show Charli.

Charli: Hi Kim, great to be here.

Kim: Good to be with you, let’s get started. Great thank you. Charli I know this can be a difficult and sensitive topic but it really is such an important one. Let’s start by talking about you and your role as it relates to terminally ill patients. Can you tell us about your role with the Cancer Support Community’s cancer support helpline?

Charli: Definitely the role of the cancer helpline counselors is to assist callers with not only finding local and national resources but a really big part of our job is that emotional support. When callers call they may be facing the end of their lives or thinking about ending their treatment. The help is that they’ll feel less alone if they call the helpline and maybe even gain some tools to communicate their thoughts a little easier.

Kim: Yeah and I just want to emphasize for our listeners Charli that the helpline certainly is for anybody at any stage of their cancer diagnosis. It could be somebody whose just been diagnosed, somebody at an early stage of cancer, it can be family members, loved ones. But it can also be for somebody who is perhaps at a later stage of doing this or maybe making some of these difficult decisions.

So anybody with any kind of cancer at any stage of illness can certainly give us a call on the helpline. Charli yourself as a two-time cancer survivor, how does your perspective influence how you help other patients? Obviously it’s been personal to you.

Charli: It sure has so dead on. I share when it’s appropriate and it feels like it’s a good segue will often share that I’m a survivor and that I’ve been a caregiver. And both roles are very difficult. Some of these callers, they may call us because they don’t feel like they’re really being heard or the people don’t understand them. They feel like they’re speaking a foreign language. Or they don’t know anyone who’s ever had cancer.

Kim: Yeah certainly. And Charli would you like to share a minute about your story today, your own cancer story?

Charli: Oh sure. I was 27 the first time and I didn’t know anything. And sometimes I think that’s easier and the second time I knew quite a bit so I was a little bit better advocate for myself. But I can say that when people call, if it’s appropriate and I share that, many times they’ll say, “How long ago?” and when I say 18 years, you hear the sigh of relief.

Because my first cancer was pretty advanced. And they say, “18 years? Oh wow.” It’s something that they may not have even heard of. They hear cancer they think they’re going to die immediately especially the people who call who are very first diagnosed. They just found out today, they just found out an hour ago. They hear cancer they immediately think, that’s it.

Kim: So Charli how often do you and your fellow helpline counselors get calls from someone maybe facing a terminal cancer? And what are some of their most common concerns?

Charli: Well more often than you might expect we get those calls and the ages vary Kim from very young adults to those who might be living in a nursing home in their eighties. For the younger caller, their concerns have a lot to do with feeling completely alone on an island. How to commit their needs to their parents or how to talk to their children.

And for older callers, one of the things I hear a lot is that their adult children don’t agree with their decision, and they don’t feel heard anymore. And they need a voice and they need to know how to communicate with their adult children. This is about me, this is about what I want not about what you want or need.

Kim: Wow, so challenging. And I know we’re going to dig into that a little bit more Charli about that the communication with the family. But how do you help to address the patients’ concerns? Maybe break it down for us a little bit Charli talk us through. Give us an example of a caller maybe give us younger caller and give us that older caller. They call you, maybe give us an example of what their concerns are and maybe what the conversation is like.

Charli: Sure. The very first thing we are is present, just listen. Let them talk, meet them where they are. A lot of times when a caregiver calls they can’t really meet the needs of the emotions of the patients. So we really try to validate patients and caregivers what they’re feeling. We’ve got that ability to be really objective.

I used to get a call from a very young man in his early 20s and it was always on the same evening that I work. And he’d been given a cellphone by his oncology social work and his hospice team was paying for that. And he just needed someone to be present with him and say, “Yeah this really stinks.” And not, “It’ll be better, it’s going to get better.”

No he needed the other person to say, “This is lousy, this is a lousy hand. And tell me what’s on your mind today. How can I help you right now this evening?” And many times just, “Let me vent. Let me tell you what happened today with this one or that one.” With older callers, one of the things I hear more than is that need, desire to stop treatment.

And I know we’ll talk about that later but, “How do I find the words to ask my doctor if I can stop?” because many times these are people in their 70s and 80s and the doctor knows everything. So they’re not used to asking questions. Or, “How do I break it to my kids?” I had a client once I walked into the hospital room and the family stopped me before I pulled the curtain.

And they said, “Turn your hospice badge around, turn it around. He doesn’t know he’s dying.” And I walked in and I sat down and I held his hand and I said, “Hey how are you today? My name is Charli,” and that’s all I said. And he said, “You got to help me, my kids don’t know I’m dying.”

Kim: Real disconnect.

Charli: Most definitely.

Kim: Yeah. And Charli is it sometimes are folks calling because they don’t have anybody else to talk to? Or is it sometimes folks are calling because they definitely have people around them, but as you’re suggesting the folks maybe just don’t understand what’s happening?

Or they just need an outside separate objective voice who’s maybe not part of the family or not connected to really kind of voice some of these concerns, and maybe find the words or language to discuss it with those closest to them?

Charli: That’s exactly what we do, I call it therapeutic scripting. Many times we will just sort of run through this scenario of, “Okay tell me what happened that really bugged you about our conversation and let’s talk about how we can reframe that and how you can go about talking about that the next time.”

Especially if people call and they’re highly emotional at the beginning of the call, one of the things that the call center counsellors, what we like to do is try to bring the octave level down just a little bit. So that by the end of the call they’re calmer.

And most people feel more empowered by the end of that call, they’re empowered to take some action. And they’ve been validated that the concerns that they have or the feelings that they have are very real. And guess what, you’re not the first person who’s called the helpline with that very same issue.

Kim: So in a sense they’re not alone.

Charli: You got it and we say that a lot on the call line. You don’t have to go through this alone, I want to make sure you’ve got our number written down and you call us back when you need to because you are not alone in this. And a lot of people haven’t heard that. We’ve had a lot of phone calls from people. The first words out of their mouth is, “I don’t have anybody to talk to.”

Kim: And now we get them connected to that, to somebody to talk to.

Charli: Whether it’s us, a mentoring organization, how to access their oncology social worker or their patient navigator. We’re really trying to help them find those tools so that they are supported and they’re not all by themselves.

Kim: Yeah. And is it the same Charli on the flipside, we’re getting up to our break here we got a couple minutes to our first break. But do you sometimes have the caregiver calling also looking for the words about how to talk to the patient or the loved one? Again maybe they feel like the patient isn’t hearing the doctor or hearing the facts or maybe understanding the diagnosis or maybe some of the harsh realities of what’s going on?

Charli: Oh yes a very high rate of caregivers call, very high rate. When I was a hospice social worker I used to do my own little hand drafted pie chart of how much time I spent with caregivers of a patient. So those conversations are just as they were when I worked in the field in oncology and in hospice care are at times very challenging.

Caregivers call the helpline sometimes completely exhausted or angry or confused. I try to remind them that anger is the bodyguard of sad and when you’re faced with the loss or the non-communication of somebody that you love you feel really powerless on top of exhaustion.

Kim: Yeah absolutely. We’ve got a lot to talk about with our guest Charli Prather Levinson. Charli has been with the Cancer Support Community working in our center in St. Louis working as a helpline counselor. She has an amazing background working with patients for particular emphasis on end of life care and end of like decision making.

We are going to cover a wide range of topics. These can be really difficult conversations, difficult things to talk about whether you are the patient, whether you are the family member whether you are the provider and the physician. So many voices in this and so many folks who do care about what’s happening.

We’re going to take a quick break here on Frankly Speaking about Cancer. Lots to discuss with Charli Prather, don’t go away we will be right back.

Your life, your health, your network. You’re listening to Voice America Health and Wellness.

Cancer Support Community is proud to be a partner of Magnolia Meals at Home, a new pilot program that aims to help patients by providing nourishing meals to households affected by breast cancer. So loved ones can spend more quality time together. This program is currently available in and around two pilot cities, Andover Massachusetts and Woodcliff Lake New Jersey.

Participants will receive one delivery of meals every month for up to six months when enrolled in the program. Each delivery includes up to seven meals designed to help meet the nutritional needs of people living with breast cancer and 10 meals for family members.

This novel program is brought to you by the AZI Women’s Oncology Program Magnolia, Cancer Care, the Cancer Support Community and Meals on Wheels Association of America. To find out if you or loved ones are eligible visit online at www.magnoliamealsathome.com or call 617-733-5848.

People living with breast cancer often find it difficult to ask for help and many of the people in their lives want to help but don’t know how. During National Breast Cancer Awareness Month, Cancer Support Community is proud to support meal trains sponsored by Magnolia, which utilizes mealtrain.com a free shared online calendar to streamline the process of giving and receiving meals for families coping with breast cancer.

Help us reach our goal of 1000 new breast cancer specific meal trains this October. To learn more visit mealtrain.com/mmt and enter the code Magnolia B or visit us at cancersupportcommunity.org.

You’re listening to Voice America Health and Wellness.

You’re listening to Frankly Speaking about Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer. Now here’s your host, Kim Thiboldeaux President and CEO of The Cancer Support Community.

Kim: Welcome back to Frankly Speaking about Cancer. I’m your host Kim Thiboldeaux. Today’s show is sponsored by Bristol Meyers Squibb. We are joined by Charli Prather Levinson a social worker and cancer support helpline counselor. We’re talking today about treatment decision making among patients with advanced or terminal cancer. Charli let’s start off this segment by talking about stage four or advanced stage cancers.

What treatments are available and when do these treatments begin to sort of shift focus on quality of life versus quantity of life? And when do treatments stop? I mean if somebody is diagnosed with stage four or advanced cancer, should they be looking at treatment options? Are there treatments available? I’m sure there’s a delicate balance, I’m sure it varies by cancer. But give us some thoughts about that.

Charli: Yeah. Chemotherapy, radiation, even surgery can be used to shrink tumors that might be causing pain and other problems. So when patients are in palliative care, quality in life generally improves. And treatment only stops when the medical team feels it’s no longer beneficial to that patient, or when the patient says, “You know what, enough is enough. I don’t wish to do this anymore. “And that is an incredibly individual decision. It’s based on multiple factors.

Kim: But let’s be clear, at this point the treatment is not going to cure the cancer.

Charli: That’s correct. It’s considered something to lessen pain and improve quality of life at that point.

Kim: Okay so let’s get into Charli some of the terminology. So I know it’s not a new term but I think in many ways in the medical profession or maybe for patients or others this term Palliative Care. Now I think a lot of folks are familiar with the term hospice but maybe not so much the term palliative care. Tell us the difference between palliative care and hospice and how we think about the two.

Charli: Well cancer and support are the guideposts of hospice and palliative care. The palliative care is generally offered earlier in the process of someone's disease so that the person can still be treated for the cancer. If the person's treatment isn't controlling the disease any longer and the medical team feels they have six months or less to live if the disease moves along in a textbook type fashion that may start to discuss hospice care.

The objective of hospice care of course is comfort and quality of life not quantity of life. And you're correct in the palliative care, we didn't hear that term much 20-something years ago when I started. And now it's really becoming pretty routine. Most hospitals even have palliative care doctors. That's all they do and so when an oncologist asks for a palliative care consult that's usually a good indication that they need to start looking at other options for comfort for people.

Kim: So it's really about symptom management and these palliative care doctors are really experts in helping a patient manage those symptoms.

Charli: They are experts and there is a team with them. So there are nurses, spiritual care coordinators, social workers. So you have a whole team behind you. So that really gives you a more of a team approach that's a little bit more individualized.

Kim: So if they're calling in palliative care, should the patient think that they are terminal or getting to end of life?

Charli: I'm unsure. I have had patients who when they hear palliative they're a little more hopeful than when they go right into hospice. And I know that when I worked in the medical model exclusively many times if we knew that patient really well we knew that family really well and maybe even culturally we knew that hospice was not the right choice for them, that's where we would start.

Kim: And Charli I read recently that the amount of time the average patient spends in hospice versus the amount of time a patient would qualify to spend in hospice-when I say qualify I mean let's say what Medicare would pay for right or what their insurance would pay for, there’s a huge gap.

The patients think that hospice means that the person is going to die within days. But they could actually be spending a much longer period of time in hospice and have that as you said comfort and support for a much longer period of time. Is that correct?

Charli: It is. It’s about a few days and it’s probably one of the most heartbreaking things I’ve ever known, I’ve experienced it personally. And I’m considered an end of life and I say this loosely “Expert” here where I practice in the Mid-West. And my own father was only on hospice for four days.

Kim: Yeah I hear that a lot because it really does imply death, right. It really does imply death.

Charli: It does and truly having been working in the end of life field for over 20 years, it shouldn’t be; it’s life. It is many times extending life because when people come on to hospice care they’re actually more comfortable and they have a longer life.

And I’ve seen that happen many times and I remember charting once and kind of chuckling after charted. I went to the patient’s home and I had to chart a patient mowing lawn unable to speak with social worker today, interfaced with daughter.

Kim: I love that entry. So Charli tell us, I know that many people establish goals that they hope to accomplish as a result of their treatment. And I also know sometimes there’s a real disconnect between the goals of the conversation between the patient and doctor about the goals of treatment. And patients sometimes don’t understand what the goal of treatment is.

Sometimes patients say the goal is a cure when that is not necessarily the case. But how do goals change when someone has terminal cancer and what are some of the more common goals as they sort of relate to end of life?

Charli: Many callers to the helpline they don’t even realize that they have goals at this particular time until they really start processing their feelings that are related to the news that they just got that there’s nothing more that they can do and that they are indeed terminal. And that’s where I’m so grateful that the call center counselors are highly trained with a lot of years of experience to facilitate these conversations in a very sensitive manner.

So many goals include making certain that their medical team and the people that they love the most actually know what it is they want, if they can no longer speak for themselves. Or know what it is they want right now today in this moment. And some of those tools our Open to Options Program is perfect for facilitating that discussion and teaching people how to start that discussion with their doctor and their loved one.

Kim: Talk about that program Charli the Open to Options Program.

Charli: Our Open to Options Program we utilize it often on the helpline and in our affiliates in our hospital partnerships across the country. It involves assisting patients in coming up with a question list for their medical team so they can make a really true informed decision about their healthcare. And in this case maybe when to stop treatment.

It can also be a really nice bridge when they have that list of questions to have a loved one go with them to the doctor and that loved one hears it in real time. And that could spark more discussion when they get home. The Five Wishes Form is another thing that I really liked utilizing when I was in a hospital setting.

And it’s an advanced directive but it’s not only a directive for physical wishes of those like Do Not Resuscitate orders, things like do I want to be home, how much medication do I want? Who would I like to be there? And in one case I had a woman who wrote pretty specifically who she didn’t want to be around.

Kim: Well that gets tricky for those who are left behind I guess.

Charli: It did.

Kim: So just touch just for a minute about advanced directive Charli for those of our listeners who maybe don’t know what that is or what that is, when you talk about a patient making sure that their wishes are known if they’re not able to do that.

Charli: They’re very important and any time you go into the hospital you’re usually asked to fill out an advanced directive or a new one if you’ve been hospitalized a lot like I have. It seems like they’re always pushing that in front of me and I’m always pulling out my fancy five wishes form. But they speak for you when you can’t speak for yourself.

Or if someone’s trying to take over your healthcare. And that’s what people that love you do, it happens. I encourage people to use these advanced directives it’s important if they can start the conversation about their own circumstances, maybe using that happened in the news.

Someone dies that was very high profile in the news they can use that as bridge and then say, “Well hey this social worker gave me this five wishes plan I was hoping maybe we could go over and talk about it.”

Kim: And this is maybe a conversation that folks would have before somebody gets sick.

Charli: I encourage everyone to do it and my poor children at the age 18 had to fill one out because their mother was a hospice social worker. And I had been faced with my own mortality twice and in my family the conversations were normalized and not feared.

So the earlier you can have those discussions, I have many times printed off five wishes forms when I have a family meeting, a family consult. And I’ve passed them out to everyone and asked everyone to fill them out so that the person who’s really ill doesn’t feel singled out and that’s worked out really well actually.

Kim: It’s a great and important conversation for families to have for sure. We are talking today with Charli Prather. Charli has been one of our cancer support community’s amazing cancer support helpline counselors for more than five years. And she has been with our organization for a number of years, she’s began her career as a hospice and palliative care social worker.

And has an incredible experience and a particular expertise in these end of life issues. We’ve got a lot more to discuss with Charli on end of life decision making. These are important topics we can’t shy away from them. Don’t go away we’re going to have more with Charli after the break. We’ll be right back.

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Effective cancer treatment requires more than just medication or surgery. For the country’s 12million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are ongoing. How to handle co-workers questions, how to get comfortable with new physical realities.

How to reassure worried family members or explain to friends your priorities have changed. The Cancer Support Community is ready to help by providing free counselling, education and hope for survivors and their caregivers. Whether online or at over 100 locations around the world, the Cancer Support Community is ready to offer the support you need to live a better life with cancer.

For more information on support groups, publications, nutrition, exercise programs and more, call 1-888-793-9355 or visit us online at www.cancersupportcommunity.org that’s cancersupportcommunity.org. The Cancer Support Community, a global network of education and hope.

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You’re listening to Frankly Speaking about Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer. Now here’s your host, Kim Thiboldeaux President and CEO of The Cancer Support Community.

Kim: We’re back with Frankly Speaking about Cancer. Today’s show is sponsored by Bristol Meyers Squibb. We’re joined by Charli Prather, a social worker and Cancer Support Community helpline counselor. In this segment we’re going to shift our focus to talking about importance of effective patient provider communication when focusing on end of life care. Charli in situations like this it can be hard to find the right words to comfort someone. What do you say to someone who is dying of cancer?

Charli: Listen. Listen to find out where they are so that you can assess where to meet them. That’s the best advice I can give anyone. I don’t always have pearls, and I tell people that. I don’t have pearls but I’m here and you’re not alone. The majority of callers just appreciate having somebody they can be honest with and talk about their fears.

One of the most important things I learned 20 years ago was to ask a question, what scares you the most. It’s usually a therapeutic moment, what scares you the most? It’s a great way to start a difficult conversation when people might be a little they’re all over the place they don’t really know why they’re calling. So really being able to ask that question and just be present with where they are. Just meet them where they are.

Kim: What are some of the answers that people have given you to that question?

Charli: I think the answer I hear the most is, “Will my family be okay?” and, “I don’t want to die in pain.” Those are two that they’re worried about other people, that they’re really afraid of being in pain.

Kim: And on the family issue Charli, so are there specific tips? Are there pieces of advice that you give them about the family piece?

Charli: I do and when a family is fractured due to the loved one dying and maybe everyone isn’t on the same page, or people have very different ideas on how that’s really supposed to happen the validation of the patient and the caregiver, whomever calls. And believe me I’ve had radio calls where I had a woman call and she said, “I’ve got my husband on the other end of the phone he’s driving me crazy.”

“He wants to stop treatment and I’m not having it.” and then he’s on the phone saying, “Well she doesn’t understand that I’ve had enough of this, and I may be four and I should be able to just hang at our second home.” And those calls are very challenging but if facilitated appropriately and they usually are, we can get people to a better place by simply validating the concerns of each party.

And caregivers and patients sometimes they have the very same concerns but they can’t hear each other unless a third party asks them to listen to the other person. They haven’t really thought about that.

Kim: Yeah. So Charli how does somebody know when it’s time for them to stop treatment? I mean do you feel like a patient knows, they just know? Do you think they need validation from their doctor? Do they need validation from a loved one? Does it vary person by person?

Charli: It does. It’s a very individual decision. When a person feels like they aren’t living anymore because all they do is drive to treatment, or maybe they had to go really far away from home and they miss their home. And they miss their kids or they miss grandkids or they miss their dog or going out for coffee. Or they feel their quality of life is so poor because their symptoms can no longer be managed then that’s when those discussions need to happen with our doctors and our loved ones.

Kim: So talk about that conversation with the doctor because I know sometimes that can be difficult for the doctors too, right. Doctors don’t go to medical school to help people die, right. Doctors go to medical school to treat people, they go to medical school to help people live to help people get better.

And I know sometimes it can be the doctor who can be hard to convince of this conversation. And I also think that they are in medical school not trained particularly well for these moments and these conversations. Talk a little bit about that.

Charli: Well at the risk of offending my cardiologist brother in law I will do that. Doctors are receiving a lot better education on the subject of death and dying than they were 20-somehting years ago. But just as you said they remain in that very sensitive position of healers. And especially in western culture we see death as failure.

Kim: Yes.

Charli: And again that’s where I really believe in that Open to Options process, it starts the discussion that many times doctors are relieved that the patient brought it up. And now they’ve got the structured forum to have a really frank discussion.

Kim: Yeah. I know sometimes Charli you use a phrase or term being with dying. What does that mean?

Charli: Joan Halifax wrote a beautiful book on Being with Dying. And she’s a spiritual person who’s done a lot of work out in counseling and in other places. She and Ira Byock have probably done some of the most important work. And it just means being comfortable and being accepting of that person’s process or their end of life process.

Just being present and one of the things that I think physicians can say is, “I’m still going to be your doctor throughout your illness.” That really goes a long way for fearful patients. And that’s their way of saying I’m going to be with your dying. Ira Byock sees that as the final stage of survivorship. And he talks a lot about that in some beautiful books that he wrote; The Four Things That Matter Most, Dying Well. He does a beautiful job of educating other physicians on this.

Kim: So talk a little bit Charli about if you’re talking to a patient who calls you and they say, “I’m done, I don’t want any more treatment but I don’t know how to tell my family. I can’t find the right words.” I remember talking to a patient in Philadelphia and he had lung cancer and he had been through it. He tried everything.

I mean lung cancer he lived almost three years. He was on seven different treatments for three years which was a number of years ago which was pretty great for lung cancer at the time. And the reason I didn’t want to tell my wife is because I was afraid she would think I was giving up on her, giving up on the family.

And he said, “Once I convinced I wasn’t giving up, I was just sort of letting go, once I could figure out a way to tell her that didn’t seem like I was giving up, it seemed to go a little bit better.” But what would you advice patients when they’re trying to find the right words to talk to their family about this?

Because sometimes you’re right it is the family that’s fighting so hard. And they don’t want to lose the patient, they don’t want to lose the family member, they don’t want to lose their loved one. And sometimes they can’t see that the patient is just ready to go.

Charli: There’s a real barrier there. I’ve lived it so I understand it more now since September 3rd losing my own father than I ever got it before. And I can tell you from experience that maybe asking your loved ones the very same thing that I see doctors and I myself have asked patients, “What scares you the most about me letting go? Let’s talk about what scares you the most.

And maybe this is the only time we every talk about it but let’s talk about it on Sunday at one and then if you don’t ever want to talk about it again we won’t. But please can we talk about it Sunday at one, what scares you the most? And then addressing all of those fears.”

Kim: Are there steps that can make that process easier Charli like maybe the patient thinking about their legacy? Or I know like a lot of families the patient wants to write stories or notes. They want to make a video, they want to think about their legacy. Are there steps, activities, actions that can make it easier?

Charli: There are and there is a legacy project out there. and we will definitely when we pull all this up I’ve got a lot of really good resources out there that we’ll be able to put on the website that talk about how to leave a legacy. And why that’s important, and why that becomes a part of the process of letting go.

When patients and family members differ in their opinion of what’s best for them, it can be life changing when they start hearing each other. And again sometimes they have to be facilitated by a third party opening up those lines of communication. A third party needs to come into that discussion.

Kim: Yeah. Charli we’re getting close to our next break but I was telling you on the break about some of my travels. And I have to tell you when I first came to work at this organization I was kind of a kid. And one of the things I kept hearing patients say was that cancer was a wakeup call to them.

And I kept saying to myself, “Oh my gosh it’s like motivating me to really live my life and do all the things that I want to do.” Is that something that you’ve witnessed in your time in this work is really you got to make those choices and decisions?

Charli: It does. And certainly I can’t tell you how many times I jump off the call line at the end of my shift and I look at my husband and I say, “I have no problems.” Because cancer is a wakeup call and ending treatment can be something that can really pull a family together. It doesn’t have to pull the family apart. And culturally westerners have a long way to go in viewing end of life, even if end of life is much earlier in your life than you want it to be.

Kim: Yeah. This is Frankly Speaking about Cancer, we’re talking about end of life decision making with Charli Prather. We’re going to take a quick break. More to discuss with Charli. We’ll be right back.

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You’re listening to Frankly Speaking about Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer. Now here’s your host, Kim Thiboldeaux President and CEO of The Cancer Support Community.

Kim: We’re back with Frankly Speaking about Cancer. Today’s show is sponsored by Bristol Meyers Squibb. We’re closing today’s show with Charlie Prather a Cancer Support Community helpline counselor and a licensed social worker. Charli I want to start this segment off with a question about clinical trials. If a patient is on hospice care, and a clinical trial becomes available that could help them, can the patient be eligible to participate in the trial?

Charli: Well patients with cancer and their doctors face a bit of a conflict when there’s not a known treat left because Medicare and other insurers don’t allow clinical trial participation and hospice care to occur at the same time. Now I know that sounds a little bit complicated but that being said I’ve certainly seen patients opt out of hospice if a trial is presented that may help them live longer.

And there’s a very common misconception that once you enter into hospice that you’re there and you can’t get out and it is as simple as verbally saying, “I’m opting out of hospice,” and then following up later with a signature and moving into that clinical trial.

Kim: Interesting. Charli I want to make sure as we move towards the end of the show today that we do provide our listeners with some resources, tips support. I’m going to tell folks if they are listening right now to grab that pen and paper or pull out that computer or that iPad, because I do think it’s important. I know a lot of folks listen to our show for real life tips, resources, websites lists, things like that that they can access in real time.

And before we get too close to the end of the show I want to make sure we have some time Charli to guide our listeners to some of those resources today and we’ll have a chance to continue to guide folks to that. I know you’ve for example talked about something called Five Wishes. Talk to us Charli a little bit about some of the resources that you mentioned on the show, other resources that you can direct our listeners to and where they might be able to find some of these resources to help them with their planning.

Charli: I really like the fivewishesagingwithdignity.org. That’s a really good one, there’s a lot of information on that one with Ira Byock theconversationproject.org is another very good one, hospicenet.org has a lot of really great information as well as canceradvocacy.org. That has a Dying Well download that I print off many times for patients, caringconnectionsonline.org has a fantastic print out.

It’s called Ask Tough Questions that’s just absolutely bullet points every question you should ask your doctor. And then following up with an Open to Options discussion with one of our call center counselors or stopping in at one of our affiliates across the country with that question list so that you can even fine tune even more the questions that you’ve downloaded online or had one of these organizations send you through the mail.

Hospicefoundation.org, NHPCO which is the National Hospice and Palliative Care Organization is also very good as well as caringinfo.org. All of these have really great downloadable things that you can print out or you can call the 0800 number and have them sent to you.

Kim: Yeah I just want to mention our number, the Cancer Support Community helpline Charli if folks are listening right now they can certainly pick up the phone and call any of our wonderful helpline counselors including you at 888-793-9355 again that’s 888-793-9355. That helpline is available for anybody impacted by cancer or any stage of disease.

If you’ve just been diagnosed, if you’re dealing with end of life issues, if you’re caregiver, a loved one, a support person, you can call right now and speak to our helpline counselors. If you’re looking for one our centers around the country, if you’re looking for a support group, if you’re dealing with financial challenges.

If you’re looking for some tools to talk to your kids about cancer, we have a whole host of free resources for folks. I want to encourage folks to take advantage of these resources. Also many of the resources that Charli has mentioned today, all these resources are also available and listed on our website.

Charli, advice tips for patients if they’re dealing with these end of life issues with a difficult diagnosis, if they’re trying to make some of these end of life decisions. Do I continue with treatment, do I end treatment? How do I talk to my doctor? How do I talk to my family? Give us some thoughts and tips, some closing words of wisdom here.

Charli: If you need help starting the discussion, call us or ask the oncology social worker to help you have that discussion. For caregivers, meet your loved one where they are not where you are. There’s a lot of guilt and pain when you are facing with the decision to stop treatment for the patient. A lot of guilt, a lot of pain, they don’t need more guilt and pain.

So hear them, let them talk about it allow them to tell you where they are. And for families, if you feel like your medical team is not addressing the possibility of that, certainly call us about Open to Options so we can help you with the question list so that you can start that discussion. Stopping treatment or thinking about stopping treatment should always be talked about as really earlier rather than later.

And it should always be offered which is all the more reason to start these discussions earlier, just as a, “Well what if the scenario happens?” that way the doctor has already and some of your family members have already become comfortable with that realm of conversation

Kim: And then just again Charli because I know it comes up a lot if the patient’s goals are different than what the family wants. And I know that can cause some tension that can cause some uncomfortable moments. Just quickly how do you start to kind of get some resolution there?

Charli: Well, there have been times when I have asked a chaplain to intervene from the family. If a family has a faith base and there is a minister or a priest or a monk or a rabbi who already knows the family I will many times bring them into that conversation. Because they can be that neutral third party especially if they already know the family. If that’s not your family’s culture.

Kim: Orientation yeah.

Charli: Exactly to do that then again that third party is important and that means someone from that medical team, even giving a consult from palliative care. There’s nothing wrong with just asking questions. Get the consult, of course our family did that first because my mother wasn’t ready. So it was just the consult that’s all. There was no paperwork involved it’s just.

Kim: No commitment no.

Charli: No, just education.

Kim: Yeah I think that’s great advice. This is Frankly Speaking about Cancer. I want to thank you Charli for joining us on the show today it’s been very educational. And again difficult things for people to think about but you’ve really helped us with some good tips and advice for how to think through this. Thank you for listening today again please take advantage of the free services that we have at the Cancer Support Community.

Visit us at cancersupportcommunity.org or call our toll free helpline at 888-793-9355. We’d love to hear from you, thank you for listening today. This is Frankly speaking about Cancer I’m Kim Thiboldeaux, until next time be well, do well live well.

Thank you for joining us for Frankly Speaking about Cancer with your host Kim Thiboldeaux. We’re here for you every Tuesday afternoon at 1PM PT and 4PM ET on the Voice America Health and Wellness Network. In the meantime stay connected online at cancersupportcommunity.org that’s cancersupportcommunity.org.

 [End of Recording] [55:23]