Episode Transcript
[00:00:01] Hi, everyone. This is Dawn Klem, and you are on my podcast, Milkweed and Monarchs.
[00:00:08] Today, I'm going to share another patient story from a family that I worked with. And the spouse had terminal brain cancer.
[00:00:19] I thought I would start out this episode just talking to laypeople, people that don't work in health care.
[00:00:29] I think, you know, we as health care providers, and especially those of us who worked in health care for so long, sometimes we take it for granted that people understand health and wellness, but, you know, that's not really true.
[00:00:48] And it really is up to the care providers to make sure that we're explaining every detail to them.
[00:00:59] Sometimes we do explain the details to them. As a navigator, I tried my best to go over every single detail so that people would have a pretty good understanding of what treatment would look like, what symptoms might develop throughout treatment, and when to call the nurse.
[00:01:21] Me.
[00:01:23] But that doesn't mean they understood what I was saying. I think I'm so clear, right? I'm a. I'm a direct communicator, but I'm also a healthcare provider. So just because I'm direct doesn't mean I'm saying it in a way that they're necessarily going to understand.
[00:01:41] I had that happen with me so many times, and a lot of times I would be confused because I was pretty sure that I had explained it to them in a way that they would understand.
[00:01:56] They might have understand stood on some level, but you also have to understand I was dealing with terminally ill patients.
[00:02:04] You don't want to look at the worst part of that disease.
[00:02:09] You're trying to look at the optimistic side. When you're a family member, you're looking for signs of improvements, signs of how are they doing kind of thing. And, yeah, they're tolerating the chemotherapy. They're still going to radiation on time, you know, all these things.
[00:02:28] And I think that the.
[00:02:30] You're always hopeful, even though they've been given a diagnosis that it's a terminal illness.
[00:02:38] We have that hope springs eternal in all of us. And we're always hoping that we are the one that's going to defy the odds.
[00:02:49] It would be impossible not to have some kind of eternal hope, especially when you're talking about a spouse, someone that you love and care so much about.
[00:03:03] Yes, you hear the. The diagnosis that it's terminal, but in your head, you rewrite the script.
[00:03:12] Not my spouse.
[00:03:14] I'm pretty sure we can get him through this or get her through this. This is going to turn out better. We're going to prove health care wrong.
[00:03:23] I saw that so many times as a brain tumor navigator and I completely understand it.
[00:03:30] I, I mean, there but for the grace of God go I. Right?
[00:03:36] That could be any one of us, my friends.
[00:03:41] It's just a natural instinct to think that things are going to work out until they don't work out.
[00:03:51] And that's how it, it plays itself out.
[00:03:56] So when I was working in the brain tumor clinic and I would meet with the patients and their loved ones regularly and I would always go over any new symptoms, any new concerns. Is there anything that you're worried about?
[00:04:13] Do you need help with anything? Can I get you some services?
[00:04:18] You know, I would go above and beyond. I dealt with a lot of the primary care physicians to get orders for other things like physical therapy, nutrition services. I would do whatever I thought they needed as long as they were still functioning relatively well.
[00:04:42] All that being said, there are times when even the spouse, I don't know if it's a denial mechanism or if it's a, they don't really understand the disease process, but there's times when even the spouse thinks that the patient is doing better than the patient actually is. And when we see the patient in clinic, all of us are like, wow, didn't they know that this is not good?
[00:05:15] So that has happened to me a couple times and this particular story was very troubling to me, first of all, because I absolutely love the family so much.
[00:05:29] It was a wife, the husband is the one that had the brain tumor and they had an adult daughter that was also helping care and making sure that the, her father would get to rides to the clinic or to appointments or radiation.
[00:05:47] So they had a good strong family network. His wife was still working.
[00:05:53] I believe she was in her later 60s, but she was still working.
[00:05:57] She had a dry sense of humor. Oh, she was so funny and she was a delight to talk to. I have to say. She was one of my all time favorite people. I just loved her. She was wonderful, you know, and she was trying to put a sense of humor into a situation that really wasn't very funny.
[00:06:20] But sometimes laughter is the best medicine and sometimes you need that sense of humor just to get you through the next day.
[00:06:31] So they, the patient's spouses reached out to me on a continual basis. I would want them to, if there was any change in condition, I would expect to hear from them. If they had a question about anything, if they needed medications refilled, anything at all, they were encouraged to call me. And I had no Problem with that, that's what my job was.
[00:06:55] So she had. His wife had been calling me a couple times, and I was trying to get to the point of, well, what do you, you know, do you think he needs an appointment?
[00:07:07] Should I have him come in and. And see the surgeon? If he sees the surgeon, maybe the surgeon will order an MRI for him and we can see if something. If there's been a change.
[00:07:23] She didn't think he really needed an mri, and we talked about it several times. It's not unusual for there to be a change in condition. And I would go and talk to the surgeon about it, and he would just go ahead and order an MRI of the brain, and then he would get the results of the mri and we would either call them in for an appointment or he would call them on the phone to give them reassurance that everything looks the same as what it's been, no progression.
[00:07:55] So I was talking to her about these options and the spouse and asking her, well, what do you think? Do you want to talk to the surgeon on the phone?
[00:08:08] Do you want me to see. Talk to him directly myself? I can see what he thinks. I can tell him there's been a little bit of change in condition, but it doesn't seem like it's anything alarming. This is how she was presenting it to me.
[00:08:24] She said he was always slow, that this is. This was nothing unusual, that he was always slow in responding.
[00:08:34] And a lot of times he would do that because he had a sarcastic sense of humor. So he wasn't quick in the wit, but when he said something, it was quite funny.
[00:08:45] So she says, I mean, he's still joking around. So I, I feel like he's not in the worst shape possible.
[00:08:56] So I'm talking to her, like on a Tuesday.
[00:08:59] On Wednesday, the surgeon came into the office and I told him about the phone call. I go, ah, she's seen a change in condition in her husband. And I think she.
[00:09:11] She doesn't really think he needs an mri.
[00:09:14] She says he's still functioning, but she says he's just off a little bit.
[00:09:19] And I don't know, do you want to order an MRI or do you want me to have him come into clinic? What, what do you. What are your thoughts? Because I'll do whatever you think is best.
[00:09:30] He goes, I don't know if there's, if she's noticing something. There probably is something done.
[00:09:36] I definitely think let's. Let's make an appointment for him to come in. He can come in on Thursday afternoon. When I'm here, I think that'd be fine.
[00:09:46] I got surgery in the morning, but I'll be in the clinic in the afternoon. Let's just make a end of the day appointment for him and then I can see him. And if he needs an mri, I can order it at that time.
[00:09:58] So I'm like, okay, that sounds good. I'll call her and let her know what's going on.
[00:10:04] So he's like, okay, sounds like a good plan. This happened all the time. I mean, I am so. I was so grateful and so fortunate to work with surgeons that listen to me, that heard from me.
[00:10:20] And I'm telling you, we took care of our patients quickly. It was a really a privilege to work with the neurosurgery team at Spectrum Health, now Corwell Health.
[00:10:35] I can't say enough about it and just being able to have conversations with the doctors where they heard what I said and they, if I said, I think this could be a problem, they were like, bring them in.
[00:10:49] So this is what happened with this patient.
[00:10:54] So it's two days later. I haven't heard from him. I know they're coming in on Thursday afternoon and I'm not thinking too much about it at all.
[00:11:03] I'm just waiting. We had a lighter schedule that day. He didn't get there till like one o'. Clock. He's the head surgeon. The guy is brilliant.
[00:11:13] That's just another reason why I enjoyed working there. It's such an honor to work with people that are just so talented in their job.
[00:11:23] So I'm at my desk and I'm, you know, working on orders and things that I need to take care of. And clinic has started. The medical assistants always bring the patients back to the room. Then the surgeon goes in to see the patient and talk to the family.
[00:11:41] And I don't get involved unless he comes out or that she comes out, whoever the physician is, and says, hey, can you go in and have a chat with so and so. I think they may need this, that or the other.
[00:11:56] So it was a pretty routine thing for me just to sit at the desk and wait to hear from them if they needed something.
[00:12:05] Once in a while, I would try to interrupt them in clinic, much to the medical assistant's dismay, to get prescriptions filled quickly. Just a yes, a thumbs up or a thumbs down, can I refill the steroids? You know, kind of thing.
[00:12:20] They don't like me to interrupt clinic, especially if the surgeons came late. But on the other hand, I wanted to get this taken care of. Before clinic was over. So it was always a precarious thing between the medical assistants and myself.
[00:12:36] But this day, knowing he's coming in, I've already talked to his spouse. I'm sitting at my desk, I'm working on labs and orders and trying to get things straightened out for the next day. He had clinic on Friday morning, not thinking too much about anything.
[00:12:54] And all of a sudden I feel somebody leaning over my shoulder and whispering into my ear. I'm like, what the heck is.
[00:13:07] What is going on here?
[00:13:10] It was weird. It was not a normal situation. So I kind of cocked my head to the left and I see that it's the. The head surgeon, the lead surgeon that I'm talking to.
[00:13:22] He says, you're not going to believe this. And he's trying to talk really low so people can't hear him. And that's why he is like, in my ear, which was so out of character for him.
[00:13:34] And he leans down again and he says, she brought a dead man to clinic. I go, what?
[00:13:42] He said, don't.
[00:13:44] I'm not kidding you.
[00:13:46] He's in there chain stoking. So chain stokes is a form of breathing and sighing at the end of life. You see that quite commonly with patients that are on their last leg and getting ready to die.
[00:14:05] He says, I don't want that man dying in the clinic, basically. I know that sounds so crude, but it really wasn't because the amount of paperwork and everything else that you have to go through, isn't that awful. We're more focused on the paperwork and the inhumanity of what's going on than what we need to do for this patient.
[00:14:30] He's like, I need you to take care of this right now. So I'm like, what am I gonna. So I run down the hall, I get a wheelchair, and I go in the room and I real. I take one look at him and I see what's going on. It's his wife and his brother there with him.
[00:14:48] And I said to her quietly, he's not in very good shape right now, and I'm going to have to take him to the emergency room.
[00:15:00] I'm going to wheel him myself.
[00:15:03] I'm going to be going very rapidly.
[00:15:07] If you want to follow along with me, that's good. But just know I'm not going to be walking slowly. This is of an urgent situation.
[00:15:17] And the brother and her looked right at me. They really did not have any understanding that her husband was on the brink of death.
[00:15:29] And that is the honest to God truth. And that's what I'm telling you. As healthcare workers, we just take all of that for granted. We feel like people should know that there's a change, but they don't necessarily know that. They don't. They don't. And we just can't judge them for that.
[00:15:47] So anyhow, I hoisted him up in that wheelchair and I strapped him in.
[00:15:54] He wasn't conscious really. His head was hanging down. He was breathing. With the chain stoke, I think I got a couple of out of him, but not a full sentence or anything.
[00:16:09] And I get. I get him going. We walk out of that room, down the hall, out to the elevator, and boom, we're on our way down. We get down to the elevator, we have to go to the third floor, and then we have to go all the way to the end of the hall on the third floor, and then we have to turn right and go across a bridge. Bridge that leaves a covered bridge. You know, those glass bridges that takes you over to the inside of the hospital.
[00:16:41] So I am walking as fast as I can because I have no idea if he's even going to live long enough for me to get him to the emergency room. That's how close he was.
[00:16:53] So I get him across the bridge. Of course, there I got to take another elevator down. I finally get him onto the main floor of the hospital, and you have to walk all the way to the back of the hospital to get to the emergency room.
[00:17:10] I am booking it. I am going probably faster, practically running to get this man to the emergency room. And I got to give them credit, they were trying their hardest to keep up with me, and they were not too far behind me. I mean, they're in their 70s and their late 60s, but they were keeping, keeping up pretty good. And I kept turning around to check on him to make sure. They knew the situation was grave. They knew that we had to get him down there, and they were coming with me. So I get all the way to the door of the emergency room, and the emergency room doors open, and I see a physician's assistant standing there, and he takes one look at the patient, and he starts to call a code blue, which means we're going to do CPR on him. And I go, he's not a Code blue. He's at the end of his life. We're just bringing him down here because he was in clinic today, and he's not going to be able to make it home.
[00:18:19] So they took him and they put him in a bed, and his wife could stay there with him.
[00:18:27] And basically they let him die in the emergency room that night.
[00:18:33] So sad.
[00:18:35] Really, really sad. He was a wonderful human being. His wife was wonderful, his daughter was wonderful and his brother was great. All of them were just. I can't say enough about the family.
[00:18:49] So the next day I get back to clinic and I'm just like, oh, I mean, it was, it was very traumatic. It was traumatic because I had been talking to her that week. I had no understanding that he was as bad off as he was.
[00:19:06] And really, because she didn't understand he was dying, she had no conception of what that looked like. We just take it for granted as healthcare providers that everyone will know, but that's not true. And it's kind of unfair that we would make that assumption. You know, when I get to work the next day and I'm just sitting at my desk thinking, that was so. That was horrible. That was really, really horrible. I'm almost at the point where I feel like crying because it was just a devastating situation for everyone, including the neurosurgeon, really.
[00:19:50] And my phone rings and of course it's his wife. She's calling to tell me.
[00:19:59] She said, we stayed in the emergency room for about two hours. He passed away peacefully.
[00:20:05] His brother and I got to stay the whole entire time.
[00:20:09] Every single person in the emergency room was absolutely wonderful.
[00:20:15] We could not have asked for better end of life care.
[00:20:21] And she said, I am just so grateful to you for everything that you did for my husband and my family.
[00:20:28] I, I feel so appreciative and so fortunate to have a care team that would care enough to take him down to the emergency room where we were able to be with him and watch him die. Because him at home, I don't know if I could have handled that.
[00:20:54] I really thought about the story for a long time, a really long time afterwards, because it is true.
[00:21:03] They're diagnosed with a terminal illness.
[00:21:07] They're still going. He was still going through active treatment.
[00:21:12] Patients, family members, if they don't haven't worked in health care, they wouldn't know what they were even looking for. She knew that something was wrong or she wouldn't have called me.
[00:21:24] I did get him in for an appointment, but I would say that was the first and only time in my whole entire career where the physician came up to me and said, she brought a dead man to clinic.
[00:21:38] It just made me really realize the fragility of life and treatment and the relationships that we carry with these patients and their family and the health care team.
[00:21:55] It was very, very sad.
[00:21:58] But in their minds, it turned out exactly the way that they would have hoped.
[00:22:04] And for that, I am really, really grateful.
[00:22:09] And I would say it really made me take a step back and not make assumptions on how much people understand, as far as the treatment of a terminal illness, signs and symptoms of what they're going to be looking for. I mean, I don't even think we had talked about end of life care because he had finished radiation.
[00:22:39] So you're not even at the point where you're talking about end of life care yet because you've been going through active treatment.
[00:22:48] So things do happen.
[00:22:51] And it's just God's way of letting you know. Don't assume anything.
[00:22:59] Don't assume that people know what you know and that people understand what you know.
[00:23:09] Good lesson to be learned.
[00:23:13] And may he rest in peace.
[00:23:16] Wonderful human being.
[00:23:18] And the surgeon was awesome.
[00:23:25] Until the next time.
