Episode Transcript
[00:00:01] Hi, everyone. This is Dawn Klem, and you are on my podcast, Milkweed and monarchs. I've had so many questions in relation to, is my podcast really literally going to be about milkweed and monarchs? And no, that's not the intention of the podcast. But I would say the theme behind this podcast really is transformation. And we all know that the monarch does go through a transformation, from the caterpillar to the Chrysalis, to, ultimately, the monarch. So this podcast was created to talk about transformation in people's lives. And the goal is to talk to ordinary people who are living extraordinary lives.
[00:00:59] I think this is only in my mind, but I feel like there's just so much negativity out there, even on the news, and you just get inundated by it. I really don't think the intention of our world is to be so divided like that. So I don't want to talk about politics. I don't want to talk about movie stars. I don't want to talk about professional athletes. I want to talk about ordinary people that are living extraordinary lives and have a story to share.
[00:01:39] But I am going to share with you today a little bit about how I did come up with this title.
[00:01:49] So, it was back in the early two thousand s, and I was working as an oncology nurse in a large healthcare system in New England.
[00:01:59] I was back in graduate school, and when you're in graduate school, you need to basically come up with a project or focus in on something that you're interested in. So I, along with many others in the healthcare systems, started paying more attention to end of life care issues, partly because I was an oncology nurse, and partly because the treatments that had developed over time, chemotherapy and radiation, seemed to be producing more significant side effects. And although we had better antinaga medications and things like that, when it came to end of life care, we really hadn't done much to make sure that the patient was treated the way we would want one of our loved ones to be treated. And by that, I mean most hospitals across the country did not even have private rooms to accommodate a patient that was at end of life.
[00:03:21] I worked on a 44 bed inpatient unit, and we did have private rooms, but they were for our bone marrow transplant patients.
[00:03:32] The rest of the rooms were all semi private.
[00:03:36] Some hospitals even had wards where four to six patients would be in one big room together. And we actually did have an award like that in our hospital on the medical unit. I think there were six patients in there. So what happens is, when the patient gets to the point that they are no longer able to receive active treatment. Usually that means that the cancer is either recurring or the treatment that they have been given is not really reducing the cancer burden or load. So it could be from the chemotherapy not working, it could be the radiation didn't work. It could be that they're not a candidate for surgery to remove the cancer. That seems to be the problem. And so the decision is made usually at that point. And the other thing is that sometimes they become so symptomatic from the treatment itself that they're just miserable. I just wanted to put that part in there. But the decision then has to be made about how they're going to go forward, whether they're going to stop treatment altogether.
[00:05:01] So I think at that point, we want to get that patient into a private room and so that it's peaceful and the family can be with the patient.
[00:05:18] Well, so here I am in graduate school, I'm thinking about all these things. And it just so happened. The nurse researcher that worked in our hospital was coming up with a project to look at end of life care in our particular hospital.
[00:05:36] So many studies were reviewed before that, and it indicated that families of deceased patients perceive pain control and communication as inadequate. And we knew that up front there's confusion and ambivalence in the public in trying to make health decisions for advanced health care. I mean, that's not an easy decision to come to professional. So we decided that we were going to survey patients. She hired me as a research assistant, and we decided that we were going to survey patients. And we came up with.
[00:06:17] We were going to survey patients families where most deaths occur in the hospital and which physician practices are involved with the majority of patients who die. That's how we made the determination on who we were going to do.
[00:06:37] And we knew we were going to do both quantitative, which means more scientific, and qualitative, which means more emotional research on that. And we came up with a 44 questionnaire, 44 item questionnaire. And it was broken down into five categories.
[00:06:59] Was symptom management an issue? Emotional needs, spiritual needs, the environment in which they were cared for, and communication with the healthcare team.
[00:07:13] The survey was presented to the primary contact person via telephone. So I would call the patient's family members of patients who had recently died in our hospital.
[00:07:30] The patient had to be an inpatient at the hospital. Respondents must have visited the patient at least three times during hospitalization and at least once during the final 48 hours of life, because we wanted to have an accurate picture from someone who had been there watching what was going on? And then we had some exclusion criteria. So patients who died in the emergency room were not going to be surveyed, patients who experienced unexpected or sudden death, and patients hospitalized less than 48 hours prior to them passing.
[00:08:14] The goal was to get 100 representatives, patient representatives.
[00:08:21] I called everyone and asked them if they would be willing to participate. I got the list of names daily from patients that had expired and were eligible for this study. And I would call the family member or loved one, and then they would tell me whether or not they were interested in completing the survey. Some people asked that the survey be mailed to them. Some people asked that I do the survey with them over the telephone, and it ended up that we actually got 302 participants. I collected all that data and I entered the data in, and then I held focus groups with people that were willing to participate and come in and actually talk about their loved ones situations prior to them dying.
[00:09:19] So I ran those focus groups, too, and that was really hard because in the focus group, you're supposed to be non partial. And what would happen is I would hear some of these stories that were not great. And of course, I wanted to offer comfort and some compassion to them, but I was not even allowed to talk, which, if you know me, you know, that is not an easy feat, believe me. But what I learned from that study was just amazing, and I'm so glad I got to participate in it. At the end of the study, after we reviewed the data, then we determined two things actually came out of it. The first one was we were going to have a palliative care team. So I don't know if many of you know what palliative care is. It's pretty common now. This is 20 years ago, and this is a practice in every healthcare organization now. And palliative care, a lot of times, if patients can't go further in treatment or even while they're going through treatment, palliative care is a way of doing symptom management with them. So it can be physical symptom management or it can be emotional symptom management, but you're seeing the patient regularly to make sure they're comfortable. If a patient does go off from treatment, sometimes the patient's symptoms improve. So it is good to still have palliative care involved just so that you're keeping an eye on them and you see how they're progressing going forward.
[00:11:01] So we started interviewing an ethicist and putting a palliative care team together. So that was the first thing that happened, but the second thing that really happened which I thought was great, is that we ended up creating what we call butterfly rooms. So, butterfly rooms, I think the very first one that was ever created was in 1995, and that was actually in a pediatric situation. And you could understand that, right?
[00:11:36] The reason why we created butterfly rooms is because of the symbol of the butterfly.
[00:11:43] The butterfly at the end of life holds a deep and profound meaning that serves as a general reminder of the beauty and transformation that can occur during the end of life journey. Just as the caterpillar undergoes a metamorphosis to become a butterfly, so too do individuals at the end of their lives experience a transformation transitioning from one stage of existence to another.
[00:12:12] The butterfly symbolizes hope, new beginnings, and the soul's journey beyond this earthly realm. It represents the delicate yet resilient nature of life and serves as a reminder to embrace the fleeting moments we have. The butterfly's wings and their intricate patterns and vibrant colors symbolize the uniqueness and individuality of each person's journey.
[00:12:44] And so we would create these rooms. Actually, we made ours on the medical unit there. It wasn't on the oncology unit, and the patient would be transferred down there. The room had butterflies all over it. It was such a peaceful environment for them, and it was a private room. So there's the big thing right there. We're getting them out of a unit where there's active treatment, a lot of commotion going on, and we're putting them in an environment where they can transform or move beyond this life to the next life peacefully. And that really was the goal.
[00:13:29] So that was really the first time I really looked at butterflies that way. Up until know you see butterflies. I've been to butterfly exhibits. I mean, we have one here in Grand Rapids at the Frederick Meyer Garden. I've been there a couple times. It's spectacular.
[00:13:48] There's so many things about the butterflies and their transition, so it just makes you feel like this was really the right thing for the patients. And since then, I look at butterflies, and monarchs in particular, completely different.
[00:14:09] If you're seeing a monarch butterfly frequently and feel a spiritual affinity towards them, it may be signs that the monarch butterflies are your animal spirit guide.
[00:14:22] I don't know if that's true, but for some of you, that might send a message.
[00:14:31] I actually have a friend who raises monarchs.
[00:14:38] So from the caterpillar all the way through their transformation. And I'm going to be talking with her too, because I think that will be very informative as far as the transformation goes, just the fact that she does that is transformative. To me, extraordinary, I would say. So, anyhow, the monarch is the largest butterfly of all butterflies. Some wingspans of the monarch can be up to four inches, which is huge.
[00:15:12] They also do a migration every year, or a pilgrimage, I should say, from where they are in North America down to Mexico. And the thing about them is that they go back to where their ancestors were. They have like a homing device, so they know where to go. And then when they return back here, they come back to the place that they had originated from. When they come back here, the cycle starts all over. They lay their eggs on the milkweed, and then as the eggs turn into caterpillars, the caterpillars ingest the leaves of the milkweed, and the leaves of the milkweed provide toxins even through the transformation to when they become a monarch. So predators will not go near the monarchs. So we're talking about like birds, other insects, things like that. They just won't go near them because of these toxins. And so that keeps the monarch safe. The word monarch, if you think of monarch in England, the monarchy over there. So monarch is singular and monarchy is plural. So if you think of monarch, they were supposed to be the best and brightest of everyone, and that's how they would come up with kings and queens, the best and the brightest. And so that's how the term came for monarch butterflies, because they're the biggest and they're the best and the most resilient. They're the ones that can travel 2500 miles. So it's kind of fascinating how it all comes together.
[00:17:14] And for me, doing a podcast and talking about people's transformations in their study, I mean, in their life, sorry, that's what this is really all about, because all of us have experienced some type of transformation in our lives. And I just thought this was one of the neatest titles that I could come up with, and I hope you like it too.
[00:17:48] So that ends my podcast for today.
[00:17:51] I just wanted to tell you that I have received a lot of positive feedback from my first two podcasts, and I really appreciate that.
[00:18:02] One thing I did hear, though, is that the volume was not that great, which is unusual for me. I don't have a quiet voice, but my husband is the technician behind this podcast. He's the it person. So he's been working on the sound to make sure that you can hear me and you can hear my enunciations. And so you're tuned into the story that I'm trying to tell. So please continue to give me feedback.
[00:18:34] I love hearing from you good and bad. I need to know if I'm going in the right direction or you're enjoying the stories that you hear. I have a few more sessions to do that I'm going to be telling you stories just to get us started here, but then I'm going to be interviewing people coming up, so hang in there with me.
[00:19:00] The next podcast will be in two weeks, so I'm going to be putting two podcasts out every two weeks. I decided that's how I would do it.
[00:19:11] So once again, thank you so much, and I look forward to hearing from you. Bye.
