Dr. Paul Been, Hospice Transformed Our Experience of a Malignant Bowel Obstruction

Let’s move on to a real story. So, we’re very lucky to have Dr. Paul Been with us, who’s coming to us having experienced this within his family, and he’s going to tell us about his experience of caregiving for his wife, Marin. We’ve got Dr. Charles von Gunten with us today and Dr. Christine Hudak. Christine was involved in his care. Charles and Christine are going to conduct an interview, and I want you to think about what’s the value of early referral to palliative hospice care as they tell their story, and then we’ll come back and debrief it afterwards. Fair enough? Okay, so please, join us.

Dr. von Gunten: Tell me about your wife’s illness.
Thank you guys for this. I feel honored to be here in front of you and if I can share our story with you, I think you’d find great value in that.

In November of 2014, I took my wife on a surprise trip to Napa Valley, and it was fun. We’re not much of wine drinkers, but it’s a beautiful part of the country. We came home and she was like, “I just don’t feel good. I feel bloated.” I said, “Of course you just drank too much merlot or whatever.” (laughter) So she just continued to be bloating and finally, the symptoms became pretty significant that I actually mis-utilized what emergency departments are for and brought her to one of our emergency departments, an OhioHealth emergency department, and had one of my partners take care of her, and got a CAT scan and her belly was full of cancer. And our life changed forever.

That was a couple days after Christmas, 2014. My wife was diagnosed with 3C serious ovarian carcinoma. It had traveled everywhere in the abdominal cavity, unfortunately. Everyone hears such great things about The James so there we went, we got transferred that evening, and she had a total hysterectomy and a debulking, diverting ostomy, and they put in a peritoneal port for forthcoming chemotherapy. Our life changed forever.

At the time, we had two boys, about four and two and a half years old. It was a long journey, two years and one day from diagnosis till death. She had a transient period of remission at about the one-year mark and then recurred really rapidly. We went everywhere ̶ we went to MD Anderson, Hopkins, and Mayo. I found it to be my mission on Earth to ensure that she got nothing but the best care and that we were doing everything right. And the interesting thing is, every time we went somewhere or spoke with someone, they said, “You’re at The James, the GynOnc group there is the best in the country. We agree with everything they’ve done without fail.” That was the response we got. So that was incredibly reassuring.

Labor Day of ’17 was horrible, she just had, pardon me, Labor Day of ’16 was horrible, she had just had an admission for sepsis. She had line sepsis. They had to explant everything, her ports, she had percutaneous nephrostomy tubes and had to take everything out and start over. She came home and she was miserable. Oh, and throughout that entire time, she had a malignant bowel obstruction, which is other than symptomatic treatment, pretty hard to manage.

She came home and it was at the end of August of ’16 and we woke up one morning and she said, “I can’t do this anymore.” And she was supposed to start chemo the following week, and I said, “I agree.” And it was the worst morning ever, and we called hospice and she was miserable, a hospice intake nurse came out and couldn’t get her symptoms under control at home, so we came here. We spent our Labor Day here in 2016.

And a godsend was Dr. Hudak. Dr. Hudak and I met for coffee a couple of days ago, and we were kind of reminiscing about that day. I’m an ER doctor so by nature we’re pretty aggressive folks, I said to Dr. Hudak, I said, “Here’s what I want. I want my wife to be able to sleep at night, I want her to die at home, I want her to be awake during the day, so she can play with our boys and enjoy them,” because I knew time was limited. And I think you were̶-̶ it was a big ask, right, I think.

Dr. Hudak: I said, “Oh, is that all?”
Is that all? (laughter) And what was Marin doing 48 hours later?

Dr. Hudak: She was eating cornflakes and I remember being quite nervous about that because I was like, “Couldn’t she have taken it a little easier?” She went right for the gusto.
So, you know, a lot of details during those two years that are probably not pertinent to today, but I’m a believer. I mean, the recognition that hospice and palliation need to come in sooner than later is so important for you guys to understand and I knew, as an ER doctor, you know, we don’t do hospice. We save everyone. Little old grandma comes in, 98 years old, and no known code status, we tube her, and we send her up to the unit and they probably withdraw care later that day but that’s not how we, as emergency clinicians, think.

So, I think differently now. I talk about this with patients in the ER, “Before I tube you, I want you to know your chance of coming off the vent is this. You’re going to get these complications, you’re going to get pneumonia, you’re going to get sepsis. Your grandma was anoxic for a really long time.” So, I’m a totally different individual and clinician as well.
Marin went home about a week after Labor Day. She spent seven days here. It was amazing, as amazing as a place like this can be. Marin was eating cornflakes. She was doing great. We did octreotide. Dr. Hudak did octreotide for her bowel symptoms, and it gave her a new life.

A couple of things that Marin said was, “I’m living now, I’m eating my cornflakes, I’m playing with the boys,” and we went home, and in between Labor Day and a couple of days after Christmas when she died, we went to Hocking Hills and rented a cabin with the kids and some friends and family. Marin and I took a cooking class, and she was not able to do any of this during her illness.

Dr. von Gunten: So that’s right, you’re painting this stark before/after picture. You told a story of disease treatment until your wife said, “I can’t do this anymore,” shift to hospice care, admit for symptom control to Kobacker House, and then the way you’re describing it, it was different than what you expected. And part of that was medical treatment that you didn’t know about made a difference, but there were other pieces there too that were different.
There were other pieces, not just for Marin. For myself, there were pre-bereavement resources, which were amazing, and I certainly took advantage of and continue to take advantage of. There were resources for my children. We had a great hospice nurse, Amber, you’ll meet her, she’s great. And she would just sit at the kitchen table and color with my children.

I mean, you didn’t get that lovey-dovey feeling at The James and this is by no means a knock on The James, but it just wasn’t in the cards to think about palliation or hospice for my wife. She was, “This is what we’re going to do, we run a bunch of trials, and if that doesn’t work, we have plan B, plan C, plan D,” and it was all medical therapies. So, the approach is so much different and Marin, these are her words, not mine, Marin felt emancipated while she was on the service; she felt liberated and free, and she was able to do things and things that she wasn’t able to do for the prior 20 months.

Dr. von Gunten: And I think that, in some ways, your story, she got enrolled in hospice care in order to get treatments that would make her feel better and your family cope better but it then raises the question, “Why did it take that to get those involved?”
I don’t have an answer for you. I wish that this would… happened earlier. All the chemotherapy was a fool’s errand at the end, and everyone recognized that, myself included. Perhaps her team recognized that too. But that’s just what we do, and that’s not the right thing in my mind.

Dr. von Gunten: Frank laid out that model of… how an individual and a family experiences illness, and you’ve illustrated some piece of that. I want to go after a couple of places that you didn’t. If you were to describe Marin’s emotional response to this illness, what would you say?
Terrified… in pain.

Dr. von Gunten: So, pain, physical pain, or other kinds?
Both, physical and emotional. And emotional pain.

Dr. von Gunten: So, fear, tell us a little more about Marin’s personality.
She was an accountant. So different than the ER doctor who’s managing 97 things at once. So, it was a good fit. She wanted the facts; she was an accountant. So, in medicine, 2 + 2 is not 4, right, no matter what you do, it’s close to 4 as you can get. But in accounting, it is 2 + 2 = 4 and it has to be 4. You have to prove that it’s 4. So, Marin was a very precise individual and wanted the data put in front of her and, “Here’s what we’re going to do.”

Dr. von Gunten: So, a precise individual then faced with a disease and medicine that’s a lot of gray, how did she cope? What was her coping style? Because those two don’t fit together.
They don’t. I think it was frustrating for her because there weren’t really great treatments or therapies available for her particular type of cancer. Very frustrating for her.

Dr. von Gunten: Because many people who are into control, there’s an underlying anxiety that’s kept under control by being-̶ and yet, here’s something – she couldn’t control.
That’s right.

Dr. von Gunten: And so, anxiety and fear was a big part of her experience.
But when we came here, it was the first time, her words, not mine, that she felt in the driver’s seat of her care.

Dr. von Gunten: Okay, so the more control she’d have – would help with that anxiety.
Would help with her spirit, her emotional stability, absolutely. Got it.

Dr. von Gunten: And then you said you have two boys and then you’ve painted a picture of you’re an ER doc, she’s an accountant, you have your two boys but what did this illness do to the practical issues of you as a family working together?
I was working, a working dad, my wife was a stay-at-home mom, and it was a big change when she got sick because a massive debulking seven-hour surgery that takes months from which to recover. So, I had to rearrange my work schedule, and she just hung out at home and I had different resources, grandparents, both sets of grandparents, thank God, were very involved, and babysitters, nannies, friends.

Dr. von Gunten: So, you had to marshal a whole large number of people to compensate, to keep it.
It takes an army.

Dr. von Gunten: And your boys, describe how, as well as you can tell their take on all this.
Amazing. My kids had to mature really quickly in a really short period of time, and they’re very caring and loving empathetic boys, both during and afterward, and their concept of sick is so much different than what sick really means to us, a six- and four-year-old.

Dr. von Gunten: So, describe what you can tell, what did being sick means to a 6 and a 4-year-old?
“Mommy loses her hair. Why does Mommy have a bag of medicine on her belly?” which was the ostomy. “Why does Mommy have tubes coming out of her belly? Why does Daddy have to shower Mommy?” No 4-year-old should know the word, “chemotherapy.” I just don’t think-̶ they should know Power Rangers and Pokemon but not the word chemo, and they did. And medicine would be shipped to the house every day. She had a port and, “Mommy’s medicine came here today.” So that’s their concept of sick.

Dr. von Gunten: For many children, there’s anger because there are things they expect from Mommy and then Mommy can’t do them. Did you see any of that?
Yeah but I think they acclimated rather rapidly and realize that Mommy couldn’t do it. Instead, they just gave Mommy lots of hugs, hung out with her, watched TV, sit in Mommy’s chair with her, get Mommy a blanket.

Dr. von Gunten: And for you? What was that like? Because I think to be a doc and a husband, those are two different roles.
Yeah, they merged into one, like it or not. It was very hard. But I didn’t think twice about it. I don’t know, in your wedding vows you say in sickness and in health and that’s just what you do, and I know everyone in this room would do the same for their loved one, I’m positive̶-̶ you don’t realize it until you have to do it. It was hard.

Dr. von Gunten: And then that last domain, almost everyone with a serious illness… wrestles with the “why” question, “Why did I get this?” I’m curious if your wife, what she made of that?
“Why did I get ovarian cancer?” It’s the one thing she just couldn’t figure out.

Dr. von Gunten: Can you share any of that, what the struggles were around that?
“Why me? What did I do wrong in this life?” Questioned religion. We just started our life in Columbus, we’d just started to have a great core group of friends, the boys were doing great. They were just getting into sports and activities and so just…I think she thought that cancer was a disease of the elderly, I think she mistakenly believed that cancer was a disease of the elderly, and, “Why is it happening to me? I’m 35 years young. I mean why me?”

Dr. von Gunten: And you, did you struggle with that “why” question?
I every day wished that it was me, not her, going through this. It just seems like kids need a mom more than they need a dad, in my opinion. That might not be the case.

Dr. von Gunten: Do you have a faith background, for you and your wife?
We’re Jewish.

Dr. von Gunten: And what role did that play in the illness experience?
Not a very strong one. The rabbi would show up at The James and we’d kick him out. (laughter) So then we just we changed our… religious preference to either no comment or N/A when we realize that you show up on a list… you show up on a list to your respective congregation to which you belong anytime you’re in any of the major hospitals here in town.

Dr. von Gunten: So, you’re making a distinction between religion – and the support that you needed.
Yeah, we didn’t, she nor I found it useful whatsoever. Yeah. And that was just unique to us, that might not be the case for many.

Dr. von Gunten: The goal here is just to illustrate what it was like for you.
It was not at all part of the two years whatsoever.

Dr. von Gunten: So, I’m curious, Dr. Hudak, in the role of palliative medicine doc in this story, what was it like for you?
It was a little intimidating. Marin was quite a presence. And she was a very exceedingly knowledgeable patient, and then had this ADD ER doctor coming at me. But I felt such a desire to try to… start somewhere to help you guys both, and I knew it was going to be a tall order. And we try the medicines, we had her on octreotide, we had her on steroids, we had her on different antiemetics. We figured out what was really causing her nausea. Sometimes it was pain or anxiety and not the bowel obstruction, et cetera, et cetera, and within just a couple of days, just the transformation was magical. And to hear Marin say, “I never thought I could feel this good again.”

Dr. von Gunten: So, what’s that like for you Dr. Hudak? Because I think many people frame palliative medicine as the hand holders, the they’re there, talk a lot, help people cope, and yet you’re saying there’s a use the drugs, chemistry part.
Oh, definitely, yeah. I mean I think we certainly use both. We use unique medical knowledge to try to assist when somebody’s disease has passed the point of continued treatment.

Also, I really got close with Paul and Marin and… Marin’s mom and dad. And so, I remember Marin saying, “Why are you spending so much time with me?” I’m like, “Because that’s what we do.” And she would always thank me for spending so much time with her, but it was just so important and valuable for us to have that connection and relationship, and for that trust factor to build because, let me tell you, I know she didn’t trust me the first time I walked into that room.

Dr. von Gunten: Well, that’s one of the things I’m hoping to illustrate here, the professional reward of working in this field. And so, you’re describing knowing something about treatment of the nausea and vomiting of bowel obstruction and being successful at it. But this connection piece̶-̶ say more Dr. Hudak about the professional satisfaction, the elements if you were trying to pull it apart.
So, I think that one of the reasons that I do this work is because I see a lot of what we do in modern medicine is that, we do something to people, it may or may not help them have those goals that Frank talked about, of living their life the way they want to. And so, to be able to help somebody achieve the goal of being able to go home and go to her boys’ soccer game later that week, the satisfaction to me is over the moon. It’s deeply meaningful work. Emotionally, it’s challenging, but I’ve never done anything more satisfying in medicine.

Dr. von Gunten: And Paul, from your perspective, this image of… things are going so badly that your wife one morning says, “That’s it, we’re done.” You support her. For many people, moving to Kobacker house is like going to the death house. Was that what you were thinking?
No. At least not what I was hoping. To your point, we’re so used to like this-̶ we all trained in medicine-̶ this huge team coming in at The James. Initially, the intern would come in and then later in the day, the whole team would come in. And if it wasn’t your primary-̶ the GynOnc group is five or six or seven docs-̶ if it wasn’t your primary, that attending barely knew you, and then they had one foot out the door.

It did not feel this way at all with Christine. I mean we were just not used to having someone in our home for an hour and even Marin would say, “Don’t you have somewhere else to be?” and the answer was universally, “No, I’m here for you, I have all the time in the world.” So, no, I did not think that we were going here to die. I think we’re going here, believe it or not, to live.

And I will tell you, Marin lived from after three days in here until about up to four days before she died. Dr. Hudak was never nothing but honest with us, and, “Here’s what you can expect, here’s what I think is going on.” And her time frame of things was spot on plus or minus a day or so. I mean it was unbelievable prognostication. And it was very helpful for us.

Dr. von Gunten: You were describing your wife as details, and information helped her anxiety.
Undoubtedly.

Dr. von Gunten: She had the fear but somebody that would give it to her straight.
Just a different way of thinking. For the medical oncologists or the surgical oncologists, the nausea undoubtedly had to be from the malignant bowel obstruction, but you said, “Well, there’s probably a component of anticipatory anxiety causing nausea, fear causing nausea,” and it was just revolutionary for us. Didn’t even know that these possibilities were out there, it’s just not how we’re used to thinking.

Dr. von Gunten: And a piece that you brought up-̶ Christine, your job is as an in-patient doc here at Kobacker House and yet I’m hearing about home visits. So how did that happen?
So, that happened because there is a really good hospice nurse who listened to Paul and Marin and after the home hospice doc, who’s excellent, had been out a couple of times, just didn’t have that same connected feeling. And so, the nurse, Amber, called me and said, “We were wondering if maybe Dr. Hudak could come to the home.” And I said, “I can,” because it seemed like a great idea. And so, then I was probably out three or four times and we would set up our calendars for a next visit before I left. And again, it was that walking with people in their journey. Really meaningful and profound.

Dr. von Gunten: So, what I’d like to do now is, because you’ve painted a really… a complete picture of this illness experience and this finding something to help you that you didn’t expect for a longer period than you expected, what questions do you have? Yes and I’ll repeat it for the camera.

(woman 1) I’m just curious to know if palliative care was involved prior to your hospice experience and whether or not you found it helpful?
That’s a great question and the answer’s no. And I wished that it was. It was never even suggested to us.

(man 1) I feel like certain patients in certain situations, when you bring up the idea of palliation or palliative care that I’ve heard described as a mental blow or especially so and so is a fighter and we don’t even want to consider it now. I understand in hindsight, it’s probably difficult to answer this, but do you think you would’ve-̶ how do you think you would have received a recommendation for palliation at the beginning?
I think we would’ve been very adverse to it because… my wife was on… line 3 and 4 of chemo, a fair amount of trials, early-stage trials. But like you said, she was just a fighter and then that’s what we do, right. Fight till the end. So, I think we probably would’ve adversely responded to it and… not at all would’ve accepted it. Yeah, in retrospect, I’m pretty sure that’s how we would’ve answered it.

(man 2) I’m curious, if you could share your and/or your sons’ experience with bereavement care.
Sure. Great question. My wife… said, I think she told you or a social worker, “I’m worried about my husband, he needs to talk to someone.” So, I started pre-bereavement. Who would’ve thought? It’s almost oxymoronic, right. It helped a lot. And I continued to go and it’s a free service from this institution for 13 months, I said, “Why 13 months?” They said, “Well, it helps you get through that one-year anniversary.” It just didn’t make sense to me, now it makes a whole lot of sense. Marin’s been gone for like six and a half months. My boys did not have any pre-bereavement. They do see a private counselor not affiliated with this institution and they do play therapy and it’s great. Started right after Marin died going about once a week. Now we’re down to every three or four weeks and it’s incredibly helpful. It’s incredibly helpful for many reasons. One, it’s a good barometer. Every parent thinks their kids are the best, but you know, you need some more objective data so it’s a good barometer (laughter) that she says, “Yeah, the boys are doing okay for where they’re at.” You hear from their teachers, they’re not getting in trouble at camp so those are all barometers you need, and this is probably the most important barometer. And other resources are available for the children too in school, et cetera, et cetera.

So, just because the patient dies, doesn’t mean that Kobacker and OhioHealth hospice goes away. I mean, I’m definitely taking an advantage of a counselor here in this building, In fact, we walk Peggy’s Path for our sessions unless it’s raining, and it’s incredibly-̶ and I’m not ashamed of it at all-̶ incredibly helpful for me.

You know… what happened to my wife is the worst possible thing. No one in this room should even come close to remotely having to endure it but… you have two paths that you can go down, and it’s binary: it’s one or the other. You can crawl under a hole and be sad forever or you can-̶ life is for living. I miss my wife terribly every day, and the saddest part of this is, you know, my boys are growing up motherless. That’s the worst part about it.

But I will tell you, Marin was emancipated. And it was all because of you. Sincerely. And if there’s any message for you guys who are going to do the same thing as Dr. Hudak, it’s do the same thing. Marin died and she was ready to die, and it was a beautiful thing, and I’m not ashamed to say that. Her life was horrible. She couldn’t be a mom, which is what was the best thing, that’s why she was on this Earth.

So, we’re all doing great because of our experience here for three months. It was just such a drop in the bucket, three months out of 24 months, but it was the most profound and liberating for Marin, undoubtedly.

Dr. von Gunten: Other questions?

(woman 2) Thank you again for sharing your story. How do you feel your role as a physician influenced this whole experience for both Marin and your family?
You know, we’re ER doctors, so we like instant-̶ I know there’s a couple other ER doctors in the room-̶ we like instant gratification, we were talking before. I cut my own lawn because it’s long and I’ll probably do it when I leave here and it’s short, so it’s instant gratification. (laughter) It’s great and I’m never-̶ Amber was like, “You should just outsource it, you’re so busy.” I’m like, “No.” It’s a very small lawn. So, it takes an hour so it’s just fun, and it’s just gratifying.

And like in the ER, we like to fix things. If the lung is down, we put a tube in it and then the lung is up, you know what I mean. If their blood pressure is low, we give them a couple bags of fluid and if that doesn’t work, we give him some pressers and we fix it. And it’s amazing. And I was very…I work at Riverside and Grant, and they’re very busy as I’m sure the majority of you guys are.

So, I don’t have time to sit down with patients for a really long time like you did with Marin. So, and the team that saw Marin at The James, she was in-patient all the time for various complications, bowel obstruction, et cetera, et cetera. They have one foot out the door, you know you see the intern at 5 a.m., maybe you’re up because they were drawing her blood at the same time but you barely remember it, and the team comes in and they’re out so quick. And then you have a question, so then the intern or the mid-level resident comes back, “I don’t know, I got to ask my senior.” Senior comes back, “I don’t know, I got to ask my fellow.” Fellow comes back says, “Well, it’s July, I don’t know, I’m a brand-new fellow, I got to ask the attending.” (laughter)

So, you started attempting to get an answer of, “Are we going to go home, are we going to switch from heparin to Lovenox to something else?” Well, you got the answer, 12 or 24 hours later. And that’s not what I like, and that’s not what an ER doctor is.

So, it has taught me to slow down in the ER, to sit down with a patient, to reevaluate the patient more frequently, come back and say, “Hey, Mr. Jones, the chest X-ray looked great.” Patients want to hear results really quickly and I never realized that. I would go in the beginning, said, “We’re going to do a big workup, going to get a lot of CAT scans. We’re going to give you some pain meds. I’ll come back when the workup’s over and you’ll probably go home.” And now I go back into the room as much as I can, and the patients love it.

And after Marin died, I find myself… with exceptions that you can count on one hand, I’ve never cried with a patient. I’ve cried with some pediatric resuscitations that unfortunately don’t go well because even before I was a parent. But we’re numb, right. I worked Friday and guy coded and died, and that’s what we do. It’s terrible, it’s terrible. And I walked down into the next room, and it’s almost as if it hadn’t happened.

And now I’m getting out later, I’m spending more time with patients. I’m reassuring patients more, I’m sitting down with patients. Press Ganey’s, you guys know about Press Ganey’s? My comments were, “Great doctor, really nice, really funny, loud, fast talker and seemed like he was in a rush.” And now they’re not. Those aren’t my comments anymore.

So, it’s because of you. You sat down with Marin and we said, “Don’t you have to go see another patient?” You said, “No, I’m in no rush.” And I never understood that. I was not able to not know rushing because that’s what we do. And I wish some of my partners would learn a little bit from this too.

You can’t sit for an hour in a patient’s room at Riverside. You just can’t because you have 29 patients to see before your shift’s over, you just can’t. But it’s nice to just sit down for a minute or two and spend time with families. It’s just made me a much better physician, a much better human, a much better dad, not rushed, a much better friend and son. Great question.

Dr. von Gunten: Other questions?

(woman 3) I was wondering… you were talking about your experience with discussing prognosis with Dr. Hudak and how helpful that was. I was wondering what was your experience with discussions of prognosis prior to the experience here at Kobacker along the way of your journey of different treatments and things like that?
Another great question, I think sometimes I knew more about ovarian cancer than some of the gynecological oncologists because I just made it my mission to know everything, every piece of literature, I mean, trametinib, I knew things that were in the pipeline maybe before they did. So, I knew what the data was and when we asked, they said, “Yeah, five-year survival rate is like 20%.” That’s 3C, five-year survival rate, 20%, those are the numbers we heard. That was it. She’ll probably go into some remission and then ovarian cancer comes back. By definition, 3C ovarian cancer is not curable. It comes back. It can get a little better, suppress the disease, maybe get a CAT scan that says, “no evidence or disease,” maybe the CA-125 trends down or undetectable but this is a life disease and eventually it will win. That was what we were told. It’s true.

When Dr. Hudak came in, on Day 1, we were here, she said, both of us privately discussed that we didn’t think Marin was going to make it out of here. She wasn’t eating, she wasn’t drinking, she wasn’t peeing. And then two days later, she was eating cornflakes here.

And on Halloween, we were at Hocking Hills. I said it was almost like a sense of false hope. I had Marin back, the boys had Mommy back. That was amazing. So, I needed a reality check, Marin’s parents needed a reality check and we said to you, I think privately, “What does this mean?” and you said, “Before New Year’s, that she’s going to go, go, go, go, go and then she’s going to fall off the cliff.” And on December 20th or so, Marin stopped eating, drinking, peeing, pooing, talking, couldn’t go up the steps, got a hospital bed, and she died on the 27th, just as predicted. I mean just as predicted.

(woman 3) If I may ask one follow-up question to you, you mentioned that day when she woke up and said she wasn’t-̶ no more treatments, had that ever been discussed prior to that day, had that ever been an option that was really discussed on the table with her treating teams or oncologists? I’m curious.
Yeah, it wasn’t an option for me ever to give up, for me. And I don’t think it was an option for Marin either. The team had never, we never heard the word “hospice” or “palliation” from the GynOnc team. Never, not once.

In fact, we always had a contingency. You know these trials are crazy. One trial was pretty cardio toxic and her EF dropped to like 22%. But we already knew what plan B was going to be if the trial didn’t work. So, it was never presented to us, and we never asked about it. We were the patients and the family members, it wasn’t our job to ask about therapies but it wasn’t presented to us.

And Marin woke up and said, it was a horrible night, she was vomiting the whole night, finally got symptoms under…we were doing medicines at home, and she had a port that we just left accessed, and we woke up one morning and made some calls and the rest was history. That was the best decision we ever made in those two years. Undoubtedly. Probably needed to come sooner.

Dr. von Gunten: So, I want to have an eye on the clock, and I know you wanted to-̶ Frank, did you want to debrief the session with the fellows without us so we should probably bring this to a close.
If you’d like to actually ask what people are taking away. I know there was one more question.

(woman 4) Okay, thank you for sharing. I just have one question. After your wife passed away, what did the palliative care team, hospice team here do for your family?
Yeah. Yeah, bereavement services, letters, checking in, resources, resources for me, resources for the kids, resources for grandparents. Seems like the opportunities are endless, it’s been amazing, you know, by no means is my objective to… slander The James or we can just refer to it as Marin’s site of care… pre-initiation of palliation. But they just went like this when we said we’re going on hospice. Honest to Golly. I emailed with her primary once or twice and that was it. I called them when she died and didn’t hear—so, but I can’t get rid of these Kobacker folks, and I’m happy about that.

And it’s amazing and it’s all funded on philanthropy, which is pretty amazing.

Dr. von Gunten: So, in bringing this to a close, where’s our microphone? Pass the microphone. What Frank set this session up for the broad picture of hospice and care, palliative care broadly. Then we have very specific examples but the goal is to inform you of that big picture, so what’s the take-̶ what’s one take home? And we’ll pass the microphone around from that. In particularly thinking about either the need or the value. We think about quality, we think about cost, we think about safety issues, what do you take away, focused on the need and the associated value?
(man 3) Hi there, thanks again so much for coming in, wonderful story, really appreciate it. A big takeaway for me is I think balancing this idea of fighting and balancing the idea of what is the win and what is, like how when we redefine and define our goals of care, what they are and whether the goals of care are to beat this cancer, or whether it’s to eat some cornflakes? I think the balance of that is so individual with patients and their families and even when we know the specific medicine, a palliative medicine, being very open to working with the families and really feeling them out and where they’re at in their journey.

(man 4) One thing I’ve taken out of this is just the value of being present, both the family and the patient, no matter what field. It’s been great.

(man 5) The big thing I can-̶ that I have taken away is that people don’t use it early enough and then it’s hard to distinguish when you should use it versus when you should keep fighting for treatment possibilities.

(man 6) Yes, I think palliative care should be something that every doctor knows about it and can discuss with the patients. I think maybe we’re doing this now.

(woman 4) When a patient receives [inaudible] they ask help from palliative care consult earlier, maybe it might help, I think.

(woman 5) The value for me personally is, you know, you talk about being numb to running a code and people passing away, but I certainly was hearing every word you were saying and feeling the pain and the triumphs that you were going through and so I really appreciate being able to connect with you and what you’re family went through.

(man 7) Obviously, I know you, Paul and thank you very much for coming. The thing I take away from it is just seeing the frame shift that you have from going through all this and how it can really totally benefit the family, not just the patient.

(woman 6) Thank you for sharing your story. I think what I take away is just the quality of life that she had whenever you decided to come here and just how important that can be as opposed to the prior fight that she went through prior to that and how hard that was, so thank you so much for sharing your story.

(man 8) Thank you and so sorry for your loss. I think what I’m taking away most is just how broad that ripple effect can be.

(woman 7) Being a bedside nurse at The James and now being an NP at The James, one thing that I would love to advocate for is a palliative referral or consult from Day 1 with a non-curable disease. I believe every single patient would benefit from that, so thank you.

(woman 8) Thank you so much again. I think I can echo a lot of what I’ve heard already, but I think another thing that I thought of as you were talking is just that this process is much like a dance and kind of following the lead of the patient and family and assessing readiness because I think it is really hard to… pre-empt, protect from suffering until you’d seen suffering and so just really listening and journeying alongside the patient and the family and just trying to follow the lead as in a dance. So, thank you so much.

(man 9) I heard you share a goal of ensuring that Marin got the best care possible and I’m so happy for you that you were able to find that.

(woman 9) I also wish that palliative care was an automatic referral at diagnosis. Something that would be necessarily taken out of the hands of the primary team or the family, that it was just automatically done.

(man 10 ) I think echoing what someone said earlier about defining goals of care, I’m just glad to hear that you had small triumphs, it seems like just the fact that cornflakes, you said it a few times, just that specific detail, the small triumphs along the path, I’m glad you were able to have those.

(woman 10) I think it’s important to remember you shared this too that there’s a lot of support out there when you’re going through this process and nobody needs to do this alone.

(woman 11) I really take away the message of the power of love. And in this case, it’s really with the physician and I’m sure the rest of the team and when you compare three months out of 24, I’m so moved by the fact that what remains is that experience that’s based in love.

Dr. von Gunten: So, before we finish, Paul, let’s give you the last word. What do you most want this group of physicians and NPs to take away as they are learning this field?
If you could do exactly what Dr. Hudak did for Marin, I think there’s more impact in that than in any other field of medicine. We die, right. It’s death and taxes, that’s it. Right, that’s the old adage.

And we celebrated life the last three months, and the prior 20 some months were miserable. No husband should have to shower their wife out of necessity, right. That should be a passionate thing and that’s not what was happening. No husband should…. no spouse should have to shower their spouse or change their ostomy.

So, we lived, I mean Marin and I took a cooking class on December 7th at Sur La Table at Easton. And never in a million years would she’d been able to do that until Dr. Hudak got involved. That’s a fact.

There weren’t many good days and we had more good days in those three months than we did in the prior 20. And it was all because of this institution. I’m so positive.

Everyone asks me how I’m doing. I’m doing fine and a lot of it is because of we had, like, some time together the last three months. We weren’t sleeping in the hospital, we weren’t getting woken up by the IV beeping and I’m doing great because of that, me. And Marin did great. I mean Marin did great. It was an amazing three months. We went to Hocking Hills. Not a chance we would’ve been able to do that prior.

Dr. von Gunten: Thank you very much.