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Everyone Dies (Every1Dies)
A thoughtful exploration of everything about life-limiting illness, dying, and death. Everyone Dies is a nonprofit organization with the goal to educate the public about the processes associated with dying and death, empower regarding options and evidence-based information to help them guide their care, normalize dying, and reinforce that even though everyone dies, first we live, and that every day we are alive is a gift.
Everyone Dies (Every1Dies)
Why is Appropriate and Safe Pain Management Important? with Patrick Coyne
Learn how your healthcare team ensures your safety while helping you meet your treatment goals in our final interview with an international expert on pain management.
This week is part three of our three-part interview series with Patrick Coyne, known worldwide for his expertise in pain management. The focus of this interview is the importance of appropriate and safe pain management.
Not being in pain is fundamental to having a good quality of life, and this is especially true at the end of life. Effective and compassionate management of pain may reduce complicated grief for loved ones witnessing the death. Successful pain management also has to navigate the barriers that have come into effect to deal with the opioid epidemic.
In this Episode:
- 01:45 – A Story Behind Katherine Hepburn’s Famous Brownies
- 09:54 – Interview: The Importance of Appropriate and Safe Pain Management
- 29:55 – Outro
Get show notes and more at our website, every1dies.org. Follow us on Facebook | Instagram | YouTube | Email: mail@every1dies.org
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This podcast does not provide medical or legal advice. Please listen to the complete disclosure at the end of the recording. Hello and welcome to Everyone Dies, a podcast where we talk about serious illness, dying, death, and bereavement.
I'm Marian Matzo, a nurse practitioner, and I used my experience from working as a nurse for 46 years to help answer your questions about what happens at the end of life. And I'm Charlie Neverett, an actor in New York City, and here to offer an every-person viewpoint to our podcast. We are both here because we believe that the more you know in advance, the better prepared you are to make difficult decisions before a crisis hits.
Welcome to this week's show. Please relax, get yourself some cold milk and warm brownies, and thank you for spending the next hour with Charlie and me as we talk about the importance of pain management at the end of life. This week's show is the last of a three-part series about pain management with world-renowned pain management expert Patrick Coyne.
Like the BBC, we see our shows offering entertainment, enlightenment, and education, and divide that into three halves to address each of these goals. Our main topic is in the second half, so feel free to fast forward to that chat-free zone. In the first half, Charlie has a story about lessons learned from Katherine Hepburn and a recipe you can take to your next funeral lunch.
In the second and third half, we have an interview with Patrick Coyne about the importance of pain management at the end of life. So, Charlie, what's your favorite Katherine Hepburn film? Hmm, you know, I don't have one. It's a toss-up between Woman of the Year and, oh, damn, the film she made with Peter O'Toole after Spencer Tracy died, The Lion in Winter.
The Lion in Winter. Yeah. What about you? Do you have a favorite Hepburn film? I really liked Suddenly Last Summer.
Oh, okay. Yeah. That was just like.
Yeah, okay, yeah, Montgomery Cliff. That just had so many twists in it. Yeah, I guess he was.
I don't know. I guess just, you know, he had a lot of mental health issues and was struggling with his homosexuality, so it was rough for him on set, just him personally. And apparently Hepburn saw that and just really looked after him and just did everything she could just to make, you know, the filming easier for him, which was very nice.
She was not coward of anybody who screwed around on set. You know what? I want to take back Woman of the Year. Bringing Up Baby with Cary Grant.
Really? Yes. Oh, but the Philadelphia story is great, too. No, Bringing Up Baby with Cary Grant.
And, yeah, The Lion in Winter. I'm sorry Tracy died, but boy, after he died, she just seemed to hit a different stride in her acting. Maybe she was holding back or something so that he could shine brighter.
I could understand that in their films together, but I'm just looking at thinking of her work in general. I mean, I felt she matured. Most people do that.
She got older. But, yeah, there was just, yeah, from everything I've read, that really just hit her so hard when he died. It was coming.
Everybody knew it, but, yeah. Yeah, well, we know as much as you can prepare, it still comes as a surprise. Yeah, yes.
Yes, it does. There were a couple of, somebody walked downstairs. It was some news article or something on the news here.
Somebody was just walking downstairs, and the last couple of stairs, whoever else was in the house heard a big thunk and went over, and the guy was dead. He was in his 50s. He just gone.
That was it. You just never know. My Italian mother-in-law from Staten Island used to, she would tell a story like that, and she'd always say, and he was dead before he hit the floor.
There we are. Yeah. And I would always have to contain my laughter at that because she was very consistent in that phrase, and just the way she said it, I mean, it wasn't funny that it happened, but it was funny hearing her tell that.
Right. Tell that. Yeah.
Yeah. So what do you have for our first half, Charles? Well, our first half comes from a letter to the editor of the New York Times on July 6th, 2003. In the letter, Hepburn's New York neighbor, Heather Henderson, recalled her first memorable meeting with Ms. Hepburn.
For many decades, my father used to walk across town to do his shopping on 2nd Avenue. He often stopped at a Christine's around the corner from Ms. Hepburn's townhouse on East 49th Street. One day, he suddenly came face to face with Ms. Hepburn, who was also picking up groceries.
He acknowledged her with a nod, and she responded in kind. He began thinking of her as a neighbor. In 1983, my senior year at Bryn Mawr, Ms. Hepburn's alma mater, I was frustrated I was doing poorly, and at Christmas break, I decided to quit.
I had the romantic notion of running away to Scotland to write screenplays. My father was frantic. My mother had died two years before, leaving him with all the responsibility for his said strong daughter.
He knew that Ms. Hepburn had gone through her own struggles at Bryn Mawr, so he wrote her a letter asking her to intervene. She's a great admirer of yours, and perhaps she'll listen to you, he wrote. On the way to the grocery store, he dropped the letter in her mail slot.
At 7.30 the next morning, the phone woke me up. I answered it and heard that famous voice crackling with command. Is this the young woman who wants to quit Bryn Mawr? I said it was.
What a damn stupid thing to do, she snapped. She went out to give me a lively lecture, the gist of which was that I had to finish my studies and get my degree, and after that, I could do what I wanted to do. There was no arguing with her imperiousness.
Then she said she wanted to meet us for tea. The day of our appointment was gray and wintry. Walking the long blocks to Turtle Bay, my father and I didn't speak much.
It felt as if we were about to meet the Queen. Miss Hepburn greeted us warmly. With casual auteur, she provided us with tea and some of her fameless brownies.
Though she was in her 70s, she had a youthful look, enhanced by her girlish clothes, a turtleneck, a black cardigan, and shabby khaki green pants. We talked about many things, including Bryn Mawr. She said that she was miserable there and still had nightmares about it, but she was glad she went.
At the end of the afternoon, she told me, in a rather grim tone, You're smart. It was a compliment, but it was also an admonition not to be foolish in the future. My father was invited to visit her a few times after that.
Once he heard that she was recovering from a serious car accident, and he stopped by to drop off a package of homemade brownies and a get-well note. To his surprise, he was ushered in and invited into her boudoir, where she greeted him in her nightgown. She sampled his brownie.
Too much flour, she declared, and then rattled off her own recipe, which he hastily wrote down. And don't overbake them. They should be moist, not cakey.
I'll always be grateful to Miss Hepburn for making me stick it out at Bryn Mawr, and for giving me these rules to live by. 1. Never quit. 2. Be yourself.
3. Don't put too much flour in your brownies. Bon appétit. Please go to our webpage for this week's recipe for Catherine Hepburn's favorite brownie recipe, and additional resources for this program.
Everyone Dies is offered at no cost, but is not free to produce. Many of you contact Mary Ann because of her expertise and her ability to explain complicated issues in everyday terms. So please contribute what you can.
Your tax-deductible gift will go directly to supporting our nonprofit journalism, so that we can remain accessible to everyone. You can also donate at www.everyonedies.org. That's every, the number one dies, dot org. Or at our site on Patreon, www.patreon.com, and search for Everyone Dies.
Mary Ann? Thank you, Charlie. Well, welcome back to the second half of Everyone Dies. This is the third podcast in a series of three that we've been doing about pain management, and we are once again pleased to have Patrick Coyne joining us.
Patrick is a consultant, assistant professor at the Medical University of South Carolina, Charleston, South Carolina, and is an expert in pain management, and we're so thrilled to have him with us. Patrick, welcome, and thank you for being here. Thank you for having me.
I'm very excited to be here. So Patrick and a group of colleagues put out a position statement about pain management at the end of life, and in that position statement, he listed three areas. They listed three areas that they thought that the general public needs to know about.
So in the first and second, we did the first two, and today we're talking about the third, which is the importance of appropriate and safe pain management. So Patrick, what did the group mean when they wrote that? Really that people who are having pain get the right pain medication at the right time and that it goes correctly for the situation and that we're doing, frankly, that we're doing good by our care. And so we know there are a lot of barriers and there's some challenges to getting medications to patients and supporting their families, but we know the pain medications in and of themselves can carry some burdens and some risks.
And so it's important for us to know how to prescribe safely. So we want medications to go to a household and be utilized by the patient and not by their teenage kids. We don't want to get to the community.
So we want to ensure that there's a lot of education on how to keep the medication safe, how we're going to assess that medications are being used correctly, which could be counting pills when you come to clinic. It could be doing a drug screen to make sure the medications are there. It could be making sure you're not getting medications from another provider.
So double dipping, if you will. And that we also want to make sure that we're not giving a certain medication and you may be receiving another medication, which may make those medications dangerous. And so putting them all together, there's a lot of time and energy that goes into ensuring good pain management, but also ensuring safety so that we do no harm and that you feel good, your pain is well controlled, and your quality of life improves.
And this really comes from, I think, an experienced provider and managing pain and a lot of education and having a good team, pharmacists you can trust. But the barriers and challenges are there. Some created because there are no medications available.
Some created because insurance companies tell you what they want you to prescribe, which may not be the best medication. Some because bad players do bad things. What do you mean by bad players do bad things? Patients use the medications more than we prescribed or family members took them.
So bad players, unpredictable. So in my experience, 95% of patients and families do great. And there's a small population where things just don't go as well.
And those are kind of the things that you spend 75% of your time on. Is that fair? Absolutely. I think they're a lot more time consuming because I still want to get that population comfortable, but it's a lot more work to protect them and, frankly, to protect my license.
So when I was in clinical practice, I would talk with people who are starting on an opioid about keeping their pills safe. And a lot of people would look at me like I had three heads and they would say, you're kidding. I have to be thinking about this.
And I can remember one patient who had a Christening at her house. And then when she went to go take her pain medicine, her pain medicine was gone because she kept it in her medicine cabinet in the bathroom. And people were in and out of the bathroom.
And all people need to know is that somebody in the house is have cancer or some life limiting illness. And they're having pain or whatever. And they're going to say, oh, there may be pills around here.
Let me look. Have you had that experience? Yes, it's really interesting. It's funny.
When I was selling my house, the realtor told me something that I'll never forget. He goes, take all your pills out of the house because when we do an open house, inevitably they'll all be gone. When I bought my house, I opened the kitchen cabinet, and there sitting was this woman's pain medicine.
And I looked at it, and the nurse in me, the busybody in me, wanted to go into the lecture about don't leave your meds here. And then the other part of me said, oh, I'm putting an offer in on this house. It doesn't matter.
You know, you see that, and you think, well, can anybody tell them not to just leave it in the kitchen cabinet? Yeah, I mean, I think you have to know where they're going to be safe. So you need to know your environment. You don't want your grandkids trying to experiment on your medications or the neighbor who comes by for cutting your grass and comes in for a glass of water.
I mean, a lot of things can happen. And so keeping the medication safe is important, and that's just part of its common sense. But part of it you have to think about is that these can do harm to those who aren't used to them, and they're not prescribed.
And so I don't want medications that a patient's getting to end up in the community. Right. That's not doing due diligence on my side.
And frankly, it's not for the patient. So, you know, that's why when we do an agreement, we walk through the responsibilities so that everyone's on the same page and hearing the same thing. And, you know, what's my responsibility? What's your responsibility? You know, if you lose your medications, I'm expecting a police report if they were stolen.
You know, I think you, like me, have probably heard a lot of great stories over our lifetimes, but I want to be responsible. We do drug screens, and we'll do those randomly. And so we just want to make sure patients are getting the medications we're prescribing, and if they're not, we have concern.
We do pill counts because we want to make sure that they're not using too many or not enough. So there's a lot of things that we'll do. One thing I also used to tell patients is that when you go somewhere, if you're going to be gone for more than a couple hours, take, you know, your short-acting pain medicine with you, but take one or two of your pain medicines with you.
And the thing that I would reinforce was don't take the whole bottle. Just take what you need for the time that you're going to be gone, because those are the times when the purse gets stolen, somebody breaks into the car, whatever. Yeah, I think that's good advice.
Really, you just have to be cognizant of where you live and the risks that are there. Just think of the pills like your wallet. Where would you want to leave them? That kind of way, because you're not going to leave it on the kitchen counter with 20 people around.
So I think you just have to kind of embed that in everyone's thoughts. And I also say don't raise the red flag to your neighbors or anything that, oh, now I'm on oxycodone or something, because, you know, now everyone knows. Right.
Why put yourself at risk? And some of us, you know, like we've been doing this for 20, almost 30 years, and it's common sense to us, Patrick. But I don't think it's common sense to somebody who hasn't been in this situation before. But when you say it, they'll say, oh, well, that makes sense.
But it's not something that they would come up with on their own. So for our listeners, like you're saying, oh, my God, I never would have thought of that. Well, you know, that's why we're here, is so that you do think about it and, as Patrick says, protect the community in terms of what happens to your meds.
Absolutely. And, you know, some of these medications can have street values of $50 to $100 a pill. Yeah.
So they could be of great value to bad people. Right. And it's not even always bad people in terms of it.
Sometimes it's people who are, you know, I guess won't go into that labeling, but there are people who are driven by their addiction or their circumstance that results in them doing things that they wouldn't have normally done. Is that fair to say? Yeah. I mean, why place temptation in front of people? Right.
Yeah. And so I clearly don't want anyone listening to this to be scared of taking these medications. It's just really used a lot of common sense.
Well, I think with, you know, like with anything, there's a, I mean, like with even chocolate cake, there's a potential to abuse it. There's a potential for too much. I haven't personally found where that too much place is, but there's a potential for it.
And with medications, there's a potential for it, too. But the other side of it in terms of the appropriate and safe pain management are the people who say, who sort of, you know, I call it like dieting on the diet. You know, people who are on a thousand calorie diet, but only eat 700 calories because it's even better.
And it's those people also who are supposed to take it, whatever, milligrams every 12 hours. And they think, well, I'll be asleep. I don't need to have the second dose.
Have you encountered that situation? Absolutely. And another one that I've encountered is families hiding the pills because, you know, dad's been taking those medicines every four hours, so he's getting addicted. And the reality is the drug lasts four hours.
And so this is why I think it's so critical. You know, pain management, palliative care, it's a team sport. This is what everybody has to be rowing in the same direction.
So you need great understanding of what the goal is and why the interventions are important and how to do it correctly and safely. So what do you do in those situations where, you know, you see the talk screen, you count the pills and you say, you've got 20 more pills in this bottle than what you really should. And the patient says, well, my daughter won't let me have more than this.
How do you handle that? I'm hoping the daughter's in the room. But if she isn't, I'm going to be giving her a phone call with the patient's permission and say, these are my concerns. They're impacting your father's ability to function because of the lack of medication.
If he's hurting, I know his breathing is not what it used to be, whatever is going on. And I'm afraid that if he doesn't take the medications as we prescribe them, that he is going to do much worse. And his life may be shortened because of this.
So I'm going to do a lot of education. And does that usually solve the problem? Or do you ever find yourself in a situation where it's like, well, I understand what you're saying, but I'm still not going to let him have it? You know, usually it solves the problem. Often it's a lot of misunderstanding.
But occasionally it won't. And then I'm going to ask, is there another caretaker who may be more available? Very rarely that is. But I want them to understand, you know, I have no role in the house other than education.
I want them to understand and, you know, I may just tell the patient, just do not share your pills with her. But I may not be able to beat it. All I can do is guide.
Right. Because those family dynamics are pretty strong. Yeah, we've done some unique things with strange families, like put IV PCA in the house.
Oh, so could you explain that for the listeners? Yeah, sure. So it's starting an intravenous line or a subcutaneous line, where the only way that the patient can get the medication is by pushing a button. And we've had that so that family members couldn't take the medication.
So sometimes we come up with unique ways to make things successful. So are there any other aspects that you and your writing team were thinking about when you made this recommendation? You know, as we made the recommendations, I think we made recommendations for two populations. One is because I'm talking about what I would do, and I've been doing this, as you know, for quite some time.
But a lot of providers are new and scared. And so we wanted them to have the education so they would understand how to prescribe safely and effectively. And the flip side is we know the general public is scared.
And there are a lot of wives tales out there or misinformation, and we want people to understand when prescribed appropriately and utilized appropriately, this can improve the quality of life, the quantity of life of patients and their families. And it gives time for good quality time to do the things you want to do versus suffering. And that's, I think, really, isn't that generally just exactly what people want? I think so.
I can't imagine wanting to spend the last days, weeks, or months constantly in pain, unable to focus, unable to do the things you want to do because pain is keeping you down. And if we can manage pain appropriately, patients can enjoy those days, can, you know, reestablish bonds, make new bonds, get closure. All important things.
Sometimes do some of the things that you said that you were someday going to do and someday now. And if you're in pain, you can't meet that goal that you made for yourself. No, you can't focus, you can't move, you can't focus, you're going to be depressed, and you're going to withdraw.
And actually, you're going to die sooner. Are there any questions about the importance of the appropriate, say, pain management that I haven't asked you that you think that our listeners need to know? I think if I were having pain, I would be a strong advocate for myself or my family member. Because I think a lot of providers are uncomfortable prescribing or maybe haven't done much or haven't gotten great education.
So I would expect to have my pain well controlled, which I think a lot of people don't. And I think so I would be advocating for that. I would expect the side effects to be well managed.
And if the person you're working with can't do it, it's time to look for another. Easy for me to say because there's a shortage of that, but I find a good pain, a palliative care specialist in my community, if available, or a good pain specialist, or a doctor I trust, or a nurse practitioner or a PA, or a clinical nurse specialist. So there are people out there.
There is a shortage, but there are people out there who can help you get there. I'll tell you, when I see people in the hospital, and I'm seeing people in the ER every day I practice, and it wakes me up at night knowing that they've been hurting this long. And I know we can make it better.
Right. We really can do better. And we talked in previous shows about barriers to doing that.
But I think you're right that we also have an individual responsibility when we go to the practitioner to say, you know, don't keep information from them. Tell them the truth and let them help you. Absolutely.
Absolutely. And I think things like the more information you can give the person you're working with, the provider, the better they're going to do. So I'm a big believer in pain diaries.
Tell me how you're taking your medication. Show me their effects. Do they drop your pain down? Are you able to walk better? Are they doing nothing? And, you know, all of this is going to be a big difference for how I'm moving forward, because really I want you feeling better.
Absolutely. Well, Patrick, thank you so much for your generous sharing of your time with Everyone Dies. And thank you for all the work that you've done in pain management and in educating professionals about pain management for the last 30 years.
Well, thank you. I appreciate it. Okay.
Thank you. Thank you.
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