Ellen Rudy, Living with Pulmonary Fibrosis & Dyspnea

Dr. von Gunten: Ellen, tell me what you understand about your health now.
My health now?

Dr. von Gunten: Yeah.
What I understand about my health now is that I have pulmonary fibrosis, and it is a ̶ it’s certainly a chronic disease, but it is a sort of terminal diagnosis. I’m not going to ever get better, I’m going to get worse, and so… When I first got the diagnosis the feeling that I got at the time was not only are you going to get worse, but you’re going to get worse quickly, and you’re going to die. And so, it was like a death sentence. Of course, we all know we’re going to die, but I didn’t expect ̶ I wasn’t sure that that’s where I was.

And so now, having had this experience with hospice and palliative care, I feel like I have a chronic illness that’s going to get worse. But I don’t think I’m in imminent danger of dying. And because of your help and the medication, I actually have parts of my life that are almost normal.

Dr. von Gunten: So, it sounds like what you at first were thinking about this illness, and then after your experience with hospice and palliative care, it’s changed your thinking in a way. Is it right… or your attitude?
Well, it’s changed my thinking about what’s going to happen to me. That’s probably it. In the process of the diagnosis ̶ which took forever to get the diagnosis in pulmonary fibrosis ̶ I’d had bronchoscopies and everything. They didn’t seem to come down on ̶ you have pulmonary fibrosis, and that’s it. So, we got all the records together, and my family insisted that I go to the Cleveland Clinic. They have a Pulmonary Fibrosis Center. At the end of that all-day meeting up there, it was clear that they had nothing to offer me. The pulmonologist that I met with at the end they only did one test up there and they said, “You’re just progressively worse. Each time you have your pulmonary function test, it’s worse.”

And so, at the end of the day, he said, “I have two things to say to you. For what disease you have, you could either have a lung transplant”…now I’m 81, I’m not going to have a lung transplant. “You can have a lung transplant, or there are some medications, but they have very severe side effects. Or you can go home, and you can take care of the symptoms.” And they mentioned palliative care.

So, I said, “I don’t want to live this way, I’d rather die.” If it’s going to be hospice, that’s fine. I’m not Ellen anymore. I can’t do anything; I talk fast, I walk fast, but now I can’t do that. So, I’m not Ellen.

So, then I came home, and because of my wonderful friend, Mary Jane Feller, I got in touch with you. And you came out to the house. Physicians don’t do that; they don’t make house calls, but you hadn’t read that, you didn’t know that, (laughing) and you came to the house. And I remember thinking, “This is just going to be nothing.”

But by the time you got done talking to me I… I had this… (thumps) weight on my chest, I just… You don’t want to face death. Even though you say you’re ready, and you don’t want to live, it’s just scary. So, when you came, it was this overwhelming weight of, “What they’re going to do for me?” And, “I’m going to end up my life gasping for breath, wanting to die, and having a hideous death.”

And you said, “Uh! You’re not going to have that,” and I said, “Why?” And you said, “I’m going to give you medication, and we’re going to handle those symptoms, and you’re not going to be air hungry.”

And I said, “Are you sure?” And you said, “I’m sure.” It was sort of like that weight just lifted. “He’s going to do something!” And you whipped out that prescription pad and you wrote me a prescription, which I never dreamed you would do. And not only did you write me a prescription for a narcotic, but you listened to me.

And I said, “I can’t take all narcotics, many of them make me throw up.” And so, “Which one can you take?” “I can take Dilaudid.”

“Fine.” Instead of saying, which many people had said, “Oh, that’s a very, very strong narcotic, we can’t start there”, you didn’t even bat an eye. You said, “Okay, it’s Dilaudid, and you can take it every hour. I’m going to write you a prescription, you can take every hour.”

Every hour? You know, I’d be on the floor, asleep. But what it did is it lifted that weight. I can’t even go back and tell you how I felt because it doesn’t make sense even to me.

Dr. von Gunten: Uh-huh.
And I haven’t even taken a pill yet.

Dr. von Gunten: Uh-huh.
So then, when we got the Dilaudid, after we got the dosage straightened out, those pills of itty, bitty, bitty. And you wrote it for a quarter of a milligram. They come in two milligrams.
And so, they said, “Nuh, nuh, nuh. We have to get a pill cutter, and she can’t cut it in four.”

So, you said, “Up it to one milligram.” And you never batted an eye. You never went into this, “Oh, dear me, I’m giving her too much.” You didn’t do any of that. You said, “Make it a milligram.”

So, I have my little pill cutter. And what it has done for me, which took me a while to come to grips with and I took one just before you came it makes it easier to breathe without my even realizing it. It gives me energy, it makes me almost be Ellen again, and that made no sense to me.

So that’s when I questioned you like, “Why is this working?” And probably the best explanation to me, that made sense to me, was, and this came from Mary Jane Feller, she said, “Do you remember when we used to treat congestive heart failure patients who were gasping for breath, we would give them morphine, and then they would just relax, and they would breathe. Then I thought, “Oh, my God! I remember that.” I remember that! I did that! When I was a nurse, I remember that. So, it was like, “Okay, something is helping me breathe better.”

But the second thing it did, cognitively, I think it makes me not think about the breathing. I don’t know what the doggone drug does, but it’s wonderful. And I take it as I need it. I take it every morning with breakfast. So that I’m awake, and I do the crossword puzzle, and I love the The Dispatch, and then I take it usually around noon, usually at supper time, and then bedtime. And that’s just… and that’s enough.

Dr. von Gunten: Wonderful. So, let’s go back to when I first met you. Do you remember how you were feeling, and your medical condition, when I first met you?
Well, I was losing weight like crazy.

Dr. von Guten: Right.
I think the weight loss was part of the reason for the Cleveland Clinic feeling I was ready to die. My normal weight ̶ I’m five foot, four and a half ̶ my normal weight was 127-125, and I was down to 103. It was like I was just wasting away. I was like Auschwitz ̶ I’m so skinny now, it’s just pitiful, nothing fit me.

I could not eat, and people would in the best of intentions, they would say, “Oh, try Boost, and drink Ensure, do this, and that.” I simply couldn’t get it down. So, I guess that was the overwhelming thinking is that what is going to happen to me is I’m going to waste away. And I remember saying that to you, and you said, “Not eating isn’t going to kill you.” And I thought, “Yeah, you don’t know what you’re talking about because there’s not much left of me.”

But for some reason ̶ and I can’t give Dilaudid credit for this ̶ for some reason, slowly, very slowly, over weeks, I began to eat more. And I remember the day, taking a nap constantly, I said to Ted, my husband, “I think I’m a little bit better.” He said, “I can see it.” He said, “You’re eating a little bit more, and you seem to have more energy.” I don’t know what happened. Dilaudid doesn’t help your appetite.

Dr. von Gutten: No, all it does is change your brain’s perception of the work of breathing. But you’re making the point about how that’s tied to everything else. And when you’re worried, and upset, and feeling that’s… Feeling short of breath is about one of the most frightening symptoms there is.
Oh, it is. It’s scary.

Dr. Von Gunten: Well, when that goes away, then your attention can turn to the other things.
That seems too simplistic.

Dr. von Gunten: Mmm. At least, that’s the way I think about it.
Well, and then a lot of people said, “Yeah, but you were just depressed.” Argh! I don’t buy that, I don’t think… Sure I was depressed, but I don’t think that depression was going to make me not eat. I mean literally, I thought physically I couldn’t choke the food down.

Dr. von Gunten: Yeah, well, broadly, when people have to choose between eating and breathing, they choose breathing.
I honestly, though, I didn’t feel that short… I didn’t feel short of breath enough that I couldn’t eat. I didn’t think it interfered with that. I don’t know what it was. All I know is all of a sudden ̶ not all of a sudden ̶ over a three-week period of time, I began to want to eat more. Now, I’m still too skinny, I still weigh 97 pounds, for God’s sake. So, I look… I wouldn’t want anybody to see me naked, it would be scary. But Ted and I go out to eat.

We even worked up our nerve to go to a movie. I usually could only do things in increments of two hours, and then I was just like done. And I wouldn’t let people come to visit me, that’s the other thing. I just simply couldn’t… You know, everybody ̶ their brother wants to come to see you. When you are in hospice, they want to say their last goodbye. But it was too much.

So, Ted had to say, “You know, she is really not up to that.” And then slowly he would plant the idea, he said, “I think you need to see your friends. I think you need to let them come and visit you.” And so, I began to do that. And now, I can actually say to somebody, “I can last for two hours.”

The people that are the biggest problem are the family, because once they get here, and they get on that couch, and I get on that couch ̶ they want to stay. So, finally, Ted and I have a sort of a system that he’ll look at me, and I’ll say, “Yeah,” and he’ll say, “Your mother’s fading; it’s time for you to go.” And that works.

Dr. von Gunten: Yeah. I’m remembering how fatigued you were. When I first met you, you said you’re sleeping 20 hours a day.
Oh, it seemed like it.

Dr. von Gunten: Yeah, it seemed like it.
I was sleeping at least 16 when you met me.

Dr. von Gunten: Yeah.
So, I was barely up, it seemed like.

Dr. von Gunten: Right. And that picture of losing weight, losing energy are all things that you associate with people coming to the end of their lives.
Yes.

Dr. von Gunten: Well, and then you started taking the hydromorphone, and things got better.
They did and they didn’t. I can’t give credit to that for the… that it made my appetite better, but maybe it made my brain better.

Dr. von Gunten: Well?
(chuckles) I don’t know what it did. Even now, I’m not eating enough. I really need to push myself a little bit, and food doesn’t particularly taste good. I have a very limited menu that I really like, but it’s enough. I actually have vowed that this summer, if it ever comes, I’m going to try to do a little bit of outside walking. I used to walk every night with Mary Jane. We’d walk a mile and a half to two miles every night. So, I don’t do any of that.

Towards the end of the summer, I was able to walk to her house, which is just two doors up and back. But I don’t walk in the winter because I’m afraid I’ll fall. But I will go with Ted, when Ted goes, say, to Sam’s or something like that ̶ I’ll go with him and try to walk with him around the store, but sometimes I have to go sit down.

Dr. von Gunten: Yeah. For some patients, when their symptoms get better controlled, they not only forget about their underlying illness, but they begin to even wonder if it’s really there or it’s all that bad. Does that happen to you?
Well, what happens to me is I think it’s going to get better. And it isn’t. I know it isn’t, but I keep thinking, “Look how far you’ve come,” and “Look what you can do that’s ‘normal.'” We went out to see The Darkest Hour. And I did really well, I didn’t have any shortness of breath, I didn’t have any problems. So, you fool yourself and you think, “I’m back to normal,” but then it doesn’t take any time at all, and it catches up with you, you come home, and you just collapse on the couch. I sleep eight hours every night. And I take two two-hour naps. That’s not normal. So, I’m not normal. I can’t do things with family that I would like to do.

So, those are hard… those are hard realities to deal with, those are things that make me cry, that make me say, “But I want to go visit my granddaughter,” and she’s in California, and I want to go visit her, but I can’t. My family have finally learned, don’t invite me because then I just get all weepy.

I have a grandson who is the Ohio State Marching Band, and he plays the sousaphone, and, you know, they get to dot the “i.” I’ve learned a lot about the band. I could give you a dissertation on the band, but you can’t dot the “i” until you’ve been in the band four years. So, he didn’t make it in his freshman year. Next year, he’ll be a senior, but he’s going to stay one whole semester longer so he can dot the “i.”

Dr. von Gunten: Wow.
But I want to see him dot the “i.” So, that’s my goal is I can get to the… I don’t know how we’re going to do it, but my daughter-in-law says that we’ll pull strings from somebody’s strings, (chuckles) and they’ll have a wheelchair for me, and I’ll get to go to the game where he dots the “i.” So that’s my goal!

Dr. von Gunten: Sounds wonderful!
It is a wonderful goal!

Dr. von Gunten: Yeah.
He is such a wonderful… He’s six foot five, a great big guy, but he’s just a wonderful, wonderful grandson. Very caring for us. He’s our tech support when we can’t make our iPad work or anything. But my goal is to see him dot the “i.”

Dr. von Gunten: Wonderful. I want to go back to when we were first discussing using our narcotic to treat your shortness of breath. What was on your mind when we were talking about that?
Well, I guess, what scared me… two things. Was it just going to be one of these little ̶ would it just help for a little short period of time? And would I become addicted? And, of course, I was going to become addicted, I guess. I don’t know, if you take the same thing all the time, I guess, and it is a narcotic, you do become addicted. I don’t feel… Like some days, if I only take it twice ̶ that’s unusual. But I don’t feel withdrawal symptoms, so I don’t feel symptomatic. Maybe I don’t even know what withdrawal symptoms would be, but I’m not having severe shortness of breath, and I don’t feel like I want it and can’t get it, do you understand what…

Dr. von Gunten: Right, that preoccupation with the drug ̶ you want it…
Yes, I don’t have that.

Dr. von Gunten: And when you take a dose, what effect does it have on you?
Well, when I take a dose, within an hour I don’t even have… This is so doopy. I feel better, (chuckles) and I can’t even tell you that I’m breathing better. I don’t even know that I’m breathing better. Honestly, I don’t go around puffing and panting exactly ̶ I know when I’ve overdone, and I have to sit down. But I don’t go take a dose because I’m puffing and panting. I kind of try to take them to level out my day.

Dr. von Gunten: Yeah.
That’s sort of how I look at it.

Dr. von Gunten: So, you feel better, but I’m not hearing you say you take it and you ,”Oh-ho-ho,” it’s the best thing you ever had, – like, “Oooh, I got to have my next hit.”
No, no, no. No, no, no. I never feel like that. It doesn’t hit me… It isn’t like when you read about druggies and stuff. It isn’t all of a sudden a good feeling, I don’t have that at all. I never had that ̶ that all of a sudden it’s a good feeling. What will happen is… It’s like I will have lunch, and then if I’m… …then I might take a Dilaudid, one milligram Dilaudid, and then I am able to stay up and read and enjoy the book better. Isn’t it strange? Is this a strange thing?

Dr. von Gunten: No, you’re feeling better.
I’m feeling better, but if I didn’t take it, what I would do is I would nap quicker.

Dr. von Gunten: You’d nap. And I think the fear is if you take a narcotic, you’ll be high.
Yeah, but I don’t get high.

Dr. von Gunten: You don’t get high, or it will put you to sleep. And it doesn’t put you to sleep.
It doesn’t seem to. Because it’s a very low dose. But it’s high, in a way, I’m high now.

Dr. von Gunten: I think you’re high because you’re enjoying your life.
Yes.

Dr. von Gunten: And that’s not a drug high.
No, no, no. That’s a people high. And it’s almost like… It’s almost like it’s back to me. Like I always talk too much. And so, I talk too much when I feel good.

Dr. von Gunten: Yeah. So… To me, medicine is best when it makes people more of themselves.
That’s what it does. It doesn’t make me high like I want to do something I don’t normally do. I want it to make me feel better so I can read a book! I mean, come on! That’s hardly a high.

Dr. von Gunten: Right. And the other thing that hasn’t happened to you. How long you’ve been taking the Dilaudid now?
You came the end of July, so it’s been since then. But for the first three weeks, I didn’t do anything but live on the couch. It took that long for Ted and I to even recognize that I was getting, “a little bit ̶ that I felt better.” I would take it, but I don’t know that I even knew that it was helping, to tell you the truth. And then it began to dawn on me that I was eating better, and my outlook was better. And Ted says that my depression got better.

Dr. von Gunten. Okay.
But I didn’t think I was depressed.

Dr. von Gunten: However your expectations for what was going to happen changed. But July, August, September, October, November, December, January, February…so that was eight months ago. Have you changed the dose that you’re taking?
Oh, no, huh-uh.

Dr. von Gunten: So… Because many people worry when you start a narcotic you have to use higher and higher doses. That hasn’t been true for you at all.
No, in fact, that, I would say, when I first started taking it, I remember one day I had six. Oh, I have a notebook, I write down every time I take it. I’m obsessed about that. I want to make sure I know, I don’t… But I would say probably, if I had to give you an average, if you took my little notebook, you would see probably more days with three than four. So, it’s definitely not increased.

Dr. von Gunten: Yeah. So, I think this gets at some of all the myths that get in the way of people using the narcotics.
Yes.

Dr. von Gunten: They think somebody will get high, there’ll be too many side effects, you use up its effectiveness.
That kind of surprises me.

Dr. von Gunten: And yet, I would say, from a palliative medicine perspective, this is usually what happens.
Really?

Dr. von Gunten: Yes. This is the expected course…
But this is so that you don’t have to keep using more.

Dr. von Gunten: No.
I will say the other thing, though. I’m not even sure I should talk about that. The first time you wrote me that big prescription, I looked at that big bottle of stuff, and I thought, “I just think I’m going to end it now. I’m going to take the whole bottle.” But you know, I couldn’t do that.

Dr. von Gunten: Why?
I don’t know why. Probably because of my Christian upbringing, that one shouldn’t kill oneself, I don’t know. But I made, uh… It certainly crossed my mind. Here is a big wad of it, but I don’t know. It also was scary to think maybe it wouldn’t work, maybe you didn’t give me enough to kill myself. And so then where would I be? A mess.

Dr. von Gunten: Yeah. I’m a cancer doctor by background, and every patient with cancer at some point wonders, “Should I kill myself?” rather than go forward. And the reason prescribing opioids in large quantities for cancer patients is so routine, is because they don’t. But it goes through everyone’s mind.
Really?

Dr. von Gunten: So, it’s another one of those myths that if it’s in your mind, it means “Oh, that’s dangerous,” as opposed to, “That’s what normal human beings, faced with something scary,” wonder whether they should end it. And then most people decide, “Well, on balance, no,” in the way that you have.
And the other thing is, I have such a good family, and it would be… it was already hard for them knowing that I was this sick. And just… to do it to myself, it seems selfish… the only thing I could come up with.

But I’m so glad you’re willing to talk about it out loud.

Well, I hope to heck I don’t know anybody that sees this silly video. I don’t want to talk about it to anybody. I haven’t talked to the family about… Ted knows. I don’t want to talk to people about it.

Dr. von Gunten: Right. And you don’t have to, but I think, particularly, we’re doing this for health professionals. I want them to see an example of someone who is taking this according to how it’s prescribed, is getting the expected clinical benefit, and these are the things that go through a usual patient’s mind.
Let me tell you how scary it was for me to be decertified from hospice and yet not be sure that there was a palliative care program. Now, my primary care physician, who is wonderful, said, “Don’t worry, Ellen, I’ll take care of it.” And she said, “It is more and more difficult for us to order narcotics.”

“But,” she said, “you can do it. I’m sure that I’ll be able to do it.” But it didn’t… It would’ve been so much easier if the program had just been a slide-in, and it wasn’t a slide-in.

Dr. von Gunten: That’s right.
And the other thing, and I only learned this after I began to pay attention to palliative care, is while there is a palliative care at OSU, it’s limited to outpatients ̶ only cancer patients.

Dr. von Gunten: That’s right.
Oh, yeah, come on! Why is that? I don’t understand it. Healthcare is beyond me anyway anymore. It’s so limited, based on what who pays, and how much they’ll pay, and so on, and so forth. But from the patient’s standpoint, it’s scary.

Dr. von Gunten: Yeah, it is scary.
Yeah.

Dr. von Gunten: Now, you’re more than just a patient. You are a nurse. You’re also a retired nursing school dean.
I have baggage.

Dr. Von Gunten: I wouldn’t call it “baggage,” I would say, you have another set of eyes through which to look. Compare and contrast how you see things with your nursing eyes versus your patient eyes, related to your experience with this illness.
I’m not sure what you’re trying to get at.

Dr. von Gunten: I’m trying not to put words in your mouth. You’ve taken care of lots of people who are very sick yourself…
Yes…

Dr. von Gunten: …as a nurse. You’ve also trained scores of nurses to go on and do that, to take care of people. And you were a perfectly healthy nurse doing all of that. Now you are in the position of being frightened, a disease that’s getting worse that no one can make better, getting benefit from a drug that used to frighten you. Those are two different ways of looking at things.
Yeah.

Dr. Von Gunten: Help me with what goes through your mind as you compare and contrast those.
Well… I do think, I don’t know. I guess I think when you are in a nurse role, and you are the healthy person, it’s hard to get into the shoes of the person that’s so sick. And I think sometimes, as nurses and physicians, and so on, we… don’t listen to the sick person. We know what you’re going through, we’ve already taken care of multiple patients like this, and we know what’s best for you. I think I would not be quite as arrogant if I did it again.

The other thing is… I think we don’t… I remember I was always an ICU nurse. I remember I walked fast, talked fast, and I wanted everything fast ̶ get them in, get them out, that kind of ER nurses. I was an ER nurse, too.

We used to talk in the ICU that you don’t just take care of a patient, you have to take care of that family, because when the family came in, they had 900 questions and so on. I think without any doubt the family influence on a patient is enormous, and the family support is enormous. It’s more so than I ever… Even though I knew that and saw that daily in the ICU, support of the families made all the difference.

But as a patient, I am able to stay home and take care of myself because I have someone taking care of me ̶ my husband. If I didn’t have that, I would be… I would have to have someone take care of me. And so, family, I think, I didn’t give enough credibility to family. And family can be a pain in the neck and can be obstructionists and blah, blah, blah ̶ we know all that, but they can also be the bridge that we have to have.

Dr. von Gunten: What effect has your illness had on your family?
What?

Dr. von Gunten: What effect has your illness had on your family?
Hmm. Well, no one’s too happy. (chuckles)

In the beginning, there was a lot of crying. Grandkids were better than I expected. Grandkids would come to visit ̶ they’re really good about that ̶ but they didn’t weep and wail and carry on. They just came to visit… we’re not going to talk about this illness. And I don’t know if that was an avoidance. I kind of was sitting back watching ̶ are they going to bring it up? Are they coming here to see me “just before I die?”

But they didn’t even talk that way ̶ they came to visit grandma like they always come to visit grandma. And we talked about all kinds of other things, and then Ted would say, “Your grandma’s fading,” and then they would leave. And so, there was never a downer. The grandchildren were particularly good. And they’re adults, many of them are in college, and some are already done with college. So, they weren’t downers at all.

My three boys ̶ it was harder with them. They had a lot of trouble facing the fact that I was in hospice. But they didn’t stay away ̶ that’s the part that was good. They didn’t avoid me. I don’t know.

And then, I think it took its toll on my husband… in many ways. In many ways.

Dr. von Gunten: Say some of those ways.
Well… You can’t talk about it all the time, you just can’t, you have to… you have to come to grips with the fact that you have to go on with what life you have, whatever it is. And you have to try to make it as… near “normal” as it can be.

I guess, the early diagnosis of hospice was, “She’s dying.” That’s what the “hospice” label does for you: “She’s dying.” I think we talked a little bit about, “Okay, what do you want to happen when you die,” but we didn’t dwell on it or talk very long at all. It was sort of “What are we going to do now?”

Then slowly, it’s because you have to know my husband ̶ he didn’t direct me in what to do, but he is good at planting ideas, like, “Maybe we should have an outing today. It’s been a while since you’ve been out of the house.”

“What kind of an outing?”

“Well, I’m going to go to Sam’s. Maybe you could just walk around while I’m there or something.” So, I got pushed to do things, but I got pushed gently, so that I didn’t put my heels down and say no. So, I think that thing changed.

The other thing is I hardly do anything around the house. The worst thing is I can’t cook anymore because when I stand up… If you stand up and chop things ̶ I can’t do it! I have to stop and sit down. Standing up is the biggest energy user that I have. So, I can’t cook, and I hate that. So, I end up in tеаrs multiple times on that. So finally, we just quit worrying about cooking, and we either eat out, or we bring it in, or we eat minimal. Minimal preparation, I guess, would be the thing.

Dr. Von Gunten: I so appreciate this conversation. I’m thinking, in bringing to a close, if you were giving advice to nurses, doctors who are trying to learn how to take care of people like you, what would you advise, knowing what you’ve been through?
Hmm. Oh, dear. No one made any big mistakes or anything, so I wouldn’t say that I would tell them to do something differently.

It took them way too long to diagnose the respiratory fibrosis, and I didn’t realize how bad it was until it was already really bad. I don’t know that I would blame anybody for that.

I guess, the advice I would have is… A lot of people have chronic illnesses, and they live with them, and they have a good life, and part of that is your attitude. And I didn’t have a very good attitude about a chronic illness, I didn’t want to have a chronic illness. (chuckles) And my primary care physician probably was the best advice giver. She said, “It’s your choice, Ellen. You have it. You either live with it and make the best of it, or you complain, and whine, and bitch about it.

But she said, “Lots of people live with it and have a good life.” So, I think, in all honesty, her advice was really good. Make up your own mind what you’re going to do with it. Medicine can only help you so far, and part of it is what you do with what help they offer. So, I think that would be my only piece of advice.

Dr. von Gunten: I think that’s a great piece of advice. The other thing I’m remembering, when I came to see you here at home the first time, and we spent about an hour, and when I got up to go, you expressed deep surprise, almost semi-amazement. It was a cross between being amazed and being… I don’t know, cross about it, like that I sat and listened to you, and I didn’t try to correct you, I didn’t try to change… Do you remember that?
Well, yeah. Your whole visit was a surprise. Number one, a physician visited me and sat there for an hour and listened to me chatter. That’s unheard of. And you, without batting an eye, wrote a prescription for Dilaudid, a whole big wad of pills.

Dr. von Gunten: (laughs)
That just amazed me. So, the whole thing was like, where did he come from? What planet is he visiting? And why… Why don’t more people know about him? Why was this such a surprise to me? It was a surprise to me that I could get that kind of access. And it still is to this day.

Dr. von Gunten: Yeah. I get it, and we talked about there’s… You don’t feel worthy of it, or you get to feel special, and you don’t like feeling special.
What’s so sad is what if I had a friend that I thought needed hospice? What would I do to get them in the system? The system’s not as easy to access as you think it is.

Dr. von Gunten: Absolutely! And you’d call me, and we’d figure it out.
I know, but that’s because I have an “in”.

Dr. von Gunten: That’s right.
But if I didn’t have an “in”. If Mary Jane Feller hadn’t said, “I know exactly who needs to see you. I will get hold of him immediately.” It was like manna from heaven. But I had tried on the Internet ̶ and got nothing, absolutely nothing! The frustration of that is just incredible! So, I would leave you with that. Make it easier to access these wonderful services. I stick to things, and I’m an educated woman.

Dr. von Gunten: You are.
If I’m not educated, and I give up easily, I would not have had this wonderful treatment. That is sad, Charles, that’s sad.

Dr. von Gunten: Agreed.
So, I would scream to you, “Make hospice available with a person on the other end of the phone,” not an Internet kind of thing. Just to talk to a person makes such a difference.

Dr. von Gunten: So, I promise that video clip will make that to the boardroom at Ohio Health…
Oh, my God! Tell them. Tell them, if they have a family member, they’re not allowed to pull in the people that they know. They’re not allowed to go to who they know. How would they manage?

That’s the worst thing about not… I know everybody in Pittsburgh. I could’ve picked up the phone, if I was in Pittsburgh, and had help in a minute. I’m in a strange land in Columbus, (chuckles) even though I’ve been here a long time now, since 2001. But nobody knows ̶ I’m Joe Dokes here, you know, Jane Doe. I’m not a known entity, I can’t pick up the phone and call.

Dr. von Gunten: The dean of the Nursing School that knows everyone and can call and have her bidding done.
Exactly. I don’t have that here. And if you’ve always had that ̶ I mean, for ten years at Pittsburgh, I could get anything I wanted. But when I got here, I lost everything. Yeah. I lost all my “ins”, I lost all my contacts, you know, at the Medical Center.

Dr. von Gunten: Right.
So, I think the Board of Trustees should think… people who need this thing shouldn’t have to go through a maze to get there and be frustrated. I would rather that than anything else comes out of this, is that the access to hospice is easier.

Dr. Von Gunten: I’ll try and do your bidding.
Okay!

Dr. von Gunten: Alright.
Alright. Good.

Dr. von Gunten: Thank you so much for doing this.
You’re welcome!

Dr. von Gunten: You took a lot of energy to do this.
I’m sitting here, melting.

Dr. von Gunten: I’m melting too.
Okay.

Dr. von Gunten: But I’m sure it looks good on the camera.
Oh, good. I think it might be. Are we okay?

(clapping) – (woman) Beautiful, that was fantastic!