What are the Barriers to Pain Management at the End of Life? with Patrick Coyne

World-renowned expert Patrick Coyne joins us for our three-part series on 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 created by measures to combat the opioid epidemic.

This week we are starting a three-part interview series with Patrick Coyne, known worldwide for his expertise in pain management. The focus of the first interview is about barriers to pain management at the end of life.
In this Episode:

• 01:42 – Queen Elizabeth lI Honored with a Statue of her and her Corgis
• 05:25 – Reunion Pea Casserole
• 06:51 – Interview: What Interferes with Pain Management at End of Life?
• 30:49 – Outro

Transcript

What are the Barriers to Pain Management at the End of Life

This podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. Hello, and welcome to Everyone Dies, the podcast where we talk about serious illness, dying, death, and bereavement.

I'm Marianne Matzo, a nurse practitioner, and I use 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 Navarette, 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.

So welcome to this week's show. Please relax, get yourself some cold milk and warm cookies, and thank you for spending the next hour with Charlie and me as we talk about the barriers to managing pain for people at the end of their life. With this week's show, we're starting a three-part series about pain management with a world-renowned pain management expert, Patrick Coyne.

Like the BBC, we see our show as offering entertainment, enlightenment, and education, and divided 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 babble-free zone. In the first half, Charlie has a story about a new statue of Queen Elizabeth that has been unveiled and a recipe that you can take to your next funeral lunch.

In the second and third halves, we have an interview with Patrick Coyne about the factors that interfere with managing pain at the end of life. In our first half, remember when I did a hard-hitting in-depth report about Queen Elizabeth and her corgis? Yeah, me neither, but I'm told that I did and it was brilliant. Well, Elizabeth II loved her corgis and wherever she went, her short-legged dogs were sure to go.

Now, the late Queen's relationship with her dogs has been immortalized in bronze. A seven-foot-tall statue of Elizabeth and her dogs, created by London-based sculptor Highwell Pratley, was unveiled in April on what would have been her 98th birthday. The new monument is located outside the library in Oakham, England, a small town about 100 miles north of London.

Various dignitaries attended the unveiling ceremony, but more interesting were the more than 40 corgis from the Welsh Corgi League that joined a parade to Oakham Castle. The piece was commissioned by Sarah Furniss, the Lord Lieutenant of Rutland. Oakham is part of Rutland County.

You know, Marianne, there's also Rutland County in New Jersey, too, and it's hard to tell them apart. It cost approximately $125,000. Since you stopped, I was just thinking that I would like to be the Lord Lieutenant of, I don't know, Everyone Dies? I think that's a great title.

Lord Lieutenant. Now, if you would be the lieutenant, then who would be maybe commander-in-chief? Let's say commodore. I met a vice commodore recently.

She sails, and she is the vice commodore of something sailing. That's for another time. Lieutenant, you're a high woman on the totem pole, so shouldn't your title be a little higher? I don't know.

I'm happy with Lord of Anything. I could just be the Lord of Anything. Lord Lieutenant.

Lord of Everything. Lord Lieutenant, so we could call you Double L for short. I'd rather just be called Lord, thank you.

Uh-huh. I knew it. Lord Lieutenant was not going to be enough for you.

All right, we got it. Where were we? Oh, the cost. Yeah.

125,000 pounds, which is approximately $155,000, and was funded primarily by donations per BBC News' Samantha Noble. The Rutland County Council described the piece as the first permanent memorial to Britain's much-loved and longest-reigning monarch. The work depicts Elizabeth standing and wearing a state robe and a crown.

A bronze corgi sits at her feet, nestled against the folds of her gown. The statue of the queen rests atop a pedestal made of local Ancaster limestone, which features two additional bronze corgis, one with its front paws on the pedestal, and the other standing on all fours. The sculpture includes a bench to sit on and a corgi to take selfies with.

The artist said he wanted to capture a maternal feeling of the queen and include the corgis to reflect her humanity. And speaking of that maternal feeling, our recipe this week is a grandmother, and Her Highness was a grandmother, a grandmother-approved casserole that you can feed a family with or take to your next funeral lunch. Reunion Pea Casserole is made with black-eyed peas and has a sausage and cheese filling all covered with a refrigerated crescent roll crust.

Good appetite, or as the French say, bon appétit! Please go to our webpage for this week's recipe for Reunion Pea Casserole and additional resources for this program. Everyone Dies is offered at no cost but is not free to produce. Many of you contact Marianne 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 non-profit journalism so that we can remain accessible to everyone. You can also donate at www.everyonedies.org, that's every, the number one, dies.org, or at our website on Patreon, www.patreon.com and search for Everyone Dies. Marianne? Thank you, Charlie.

Hello and welcome to our second half of Everyone Dies. We have with us today Patrick Coyne, who is a consultant and assistant professor at the Medical College of South Carolina in Charleston, South Carolina. Patrick, welcome to Everyone Dies.

Well, thank you for inviting me. Happy to be here. I met Patrick, God, it must be at least 25 years ago, maybe even longer now, when we started working on the End-of-Life Nursing Education Consortium together.

And Patrick's gone all over the world, I've gone all over the country with LNEC, and we have the distinction of having been in Colorado on 9-11, which was quite an adventure. Yes, it was. Patrick ended up driving back from Colorado, but that's another story.

So, we're going to be talking about pain management, and we're going to do a series of three parts. And this really all comes from a paper that Patrick and a few of his colleagues wrote about pain management nursing, and a position statement, which is sort of like a call for action to address some of the issues in pain management. And these are issues that have been addressed maybe in some way or another, but still have a need in terms of pain management for people who are facing the end of life.

And just to quote from the beginning of his paper, they talk about pain management is essential from the time of diagnosis of a serious illness, and throughout the disease trajectory. They go on to say that, unfortunately, the prevalence of inadequately controlled pain occurring in those with serious illness remains unacceptably high. In most cases, pain experienced by people with advanced disease can be prevented or relieved through optimal care.

Yet studies reveal that patients continue to experience uncontrolled pain in the final weeks, days, and hours of their lives. So today, we're going to be talking about the barriers to pain management at the end of life. And his article goes on to say that the barriers to adequate pain relief include those associated with the patient and family, healthcare providers, and healthcare systems.

And one of the recommendations was public education regarding these issues. And so I thought, what a perfect opportunity to invite Patrick to come on and talk about these issues. So Patrick, when you talk about barriers to pain management at the end of life, what are you and your team talking about? Well, there are a lot of barriers, and they can be very specific to a region, to a culture, to a population.

And so really all of those can come in there. But I think some of the barriers that we're seeing more commonly right now in the United States is, I would call it opiate phobia, where patients or families are afraid of pain medications because they're afraid they're going to get addicted. And I don't want to downplay that here.

Clearly, it's a concern. But when you're dealing with a life-threatening illness, it's important for you to have comfort and not to suffer in pain because we know you'll live better, you'll live longer, you'll have better quality of life, and you won't suffer. And really the fear of addiction, it's real.

And a lot of people have had their lives changed because of opiates. But the other part of it is, with good pain management by a good provider, really the chances of addiction are minimal compared to the suffering that can come with it. And I've been doing this for a long time, and I would just hate to see a patient or a family watch their loved one suffering because they're afraid of addiction.

Because clearly, it's hard to get addicted when you're in pain, because the opiates just are really working to take away the suffering rather than give you the euphoria. And honestly, I'd love to see people have that euphoria. I just never see it.

And so addiction or fear of addiction from opiates is a big issue. But we have a lot of other barriers patients and families go through. The pain medications are expensive, and a lot of families can't afford them.

And we also know that nationally, they're not prescribed equally. You know, a white Caucasian male will tend to get more pain medications than someone who's not. So women get less pain medication.

Children don't get it sufficient amounts. The elderly don't. Minorities clearly don't.

And there's some really great studies demonstrating that pharmacies and poor zip codes don't even carry pain medications because of their fears of being robbed or addictions and such. So we do have a lot of barriers that are in their patients on one side that we're dealing with. So we do need a lot of education.

And I think a lot of people have been misled by the downsides to opiates rather than how they can improve a quality of life. Opiates do more than really pain. They can help with breathing.

And we know that if someone's comfortable, they move more. And, you know, an end of life, there's some studies that will show that if patients get opiates, they probably live longer. So when you talk about the poor neighborhoods, is that the whole idea of geography is destiny when it comes to symptom management at the end of life? It can be part of it.

I mean, for people in rural communities, you know, their pharmacy may not see enough prescriptions of pain medication, so they just don't carry them. And so the people in rural communities could wait, you know, days to weeks for the drugs to arrive. Whereas inner cities may be fearful that they're going to be robbed because they carry them, so they just stop carrying them.

So the reasons can be very different based on your location. And so I think that's part of the challenges that we're seeing in the United States. So if one of our listeners is listening from a rural area, what sorts of suggestions would you give them if they're on an opioid and they're having trouble getting it? Well, I think the first thing I would do is if they're seeing a provider in an inner city, which often happens with diseases like cancer or heart failure, that they may want to try to get their prescriptions filled before they head home.

Or they can talk to their provider and say, look, my pharmacy won't have the medication you want me to have for a week. Is there something you can prescribe and talk to a pharmacist that may be available right now? And as people who, as someone who is writing prescriptions and making suggestions, I think the big issue I'm finding is there's another barrier we're dealing with right now is there are opiate shortages. And so I'm constantly changing patients from one medication to another because, frankly, we can't find the drug that the patient was on.

Wow. And why is that? I think a lot of it came down with the DEA tighten the strings on producing opiates and prescribing opiates. So their goal clearly was to decrease overprescribing of opiates and therefore decrease addiction.

And it may have had an impact, I'm not sure it did, but it had one impact for those patients who need pain medications. It's made it much harder to find them. Now, when I was working at the cancer center, the palliative care unit, I've been retired for a couple of years now, but patients would report that they'd gone to their pharmacy and the pharmacy explained to them that they get a certain number of opioids every month.

And when those opioids run out, they don't get any until the next month. Is that still a situation that you find? I find that it's a situation that pharmacies put on themselves. No one else is doing it.

So they say, we're only going to order 75 of this medication a month. And if we run out, we run out. But if they wanted to, they could order 80.

I see. Well, and I would always say to my patients, listen, get this group filled right across the street at the hospital, because the hospital will have it, because we never had any problem with the hospital having it. And, you know, it's sort of a planning thing for them.

You know, you come in for your appointment, you get your script, you go across and you get it filled right away. Because if you take that home and you wait, you might not get it in a timely fashion, which is what you've been saying. Yeah, in rural areas, that would be true.

But I'm in a large academic area and we're still running into drug shortages. Really? Wow. It's very common.

It's more often than not, it's IV pain medications, but not always. I see. So the fear of addiction is a real concern that I've heard from patients also.

And that fear can lead to shame or guilt over the use of opioids. Can you walk us through the conversation that you would have with patients if they've raised that fear? Sure. I'm usually starting with an open-ended question.

So what is it you're afraid of? And you'll get a lot of different answers. When my father got sick, they gave him morphine and he was dead in a day. I don't want that.

I do a lot of volunteer work overseas. And then some cultures taking pain medication would be a sign of weakness in their culture. And so, that would be another reason.

I've had patients say, I need to deal with it. It's a punishment from my God. And so all of these open-ended questions you could see would take you down a different road.

But the next one, the other answer may be, I'm very afraid I'm going to become addicted because my brother was an addict or I have friends who have become addicted to pain medication. And so, then my conversation would go down the road. My job is to ensure that you're comfortable, but also to keep you in no danger of getting addicted.

So I'm going to be watching how you use the medications. If you follow the prescriptions, if you run out early, in our outpatient clinic, we actually do drug screening and we're doing it for two reasons. One, I want to make sure you're taking the medications and you have a level.

But if you don't have the level, then what are you doing with the pain medications? And you know, about 5% of the population that we follow, we usually have inherited, have a problem with misusing their medications or misappropriating other medications, because they may like, let's say, take a pain medication and they'd rather they sell it for crack cocaine or something. So if we don't see the opiates there, that's your racism flag for us. But really, my job is to keep the patient safe.

So we're making sure they're using them appropriately. We're working so that they don't get addicted. And there are populations of patients who have a prior history of addiction, and they fought really hard to get clean.

And they don't want to go down that road again. So I'll bring in their sponsors from Narcotics Anonymous, and we'll all have a conversation. And I'm clearly going to try to manage pain without using opiates, if possible, with every patient.

But there is a population of patients when disease gets worse, where opiates are actually the safest and the most effective medications. So what do you do when patients come in or call and they say, my medicine's been stolen? Realistically, the first thing I said is, well, why don't you come in to see us, and I'd like to see the police report. And do people usually bring you a police report? No.

I was going to say, I've never seen a police report when I've asked for one. So I was wondering if you've ever seen one. Yeah, we're pretty much adamant nowadays that they have to do it.

And I'm not in the outpatient setting all that often anymore, mostly because I'm doing inpatient. But when I am in the outpatient setting, that would be how I'm teaching my fellows and the residents is that the expectation is that I'm going to need a police report. And if you haven't filed it, you need to file one.

And so what do people do for pain? So what's the next thing that happens after that? It's very individualized. I don't think there's what we would normally do is we'd give them medicines for two to three days. We'd be doing another drug screen.

And we would likely put them on a tighter group. So instead of getting a multiple pain medication, they may have to come in weekly until we can rebuild trust. And do you get resistance from patients for that? Oh, yeah.

But we pretty much have a, I think, nationally, everyone has a two or three strikes and you're out. And before we start prescribing, we're very clear of what their expectations of us should be, but also what our expectations of them should be. And, you know, I'll talk about having lock boxes to keep their pills safe if they're afraid friends or family may steal them, because that does happen.

I have a college student who I followed for years. He kept his locked in his trunk because he didn't trust his roommate. So they were always locked in the trunk of his car.

So, I mean, I think patients can be inventive, but I very much worry about this is often a frail population. And you never know who family or friend are going through medicine cabinets. So really, we do a lot of education about how to take pain medications and how to keep them safe and their responsibilities.

So what are the best interventions that you've seen over your years in terms of keeping those pills safe? I'm very big on lock boxes for opiate medications so that really only one or two people have the key. And I've seen people use tackle boxes for fishing with the key, but really something where no one randomly can get in. So I think that's important.

So that's one thing, but probably the number one real thing is education, letting them know that these drugs can do harm if they get out of the house. And the last thing you want is your grandkids getting sick or someone because they got a hold of medications, which could be potentially dangerous to them. And so for the provider who's prescribing them, they want it to be safe too, because if things go haywire, they're looking at their license if they didn't do the right things.

Right. So Patrick, besides lock boxes, what else would you tell people about how to keep their drugs safe? I think the first thing I would do is emphasize to the patient and their family members or caretakers is that while opiates are wonderful medications to relieve pain and other symptoms like shortness of breath, they also can cause potential harm. And the advantage to the patient will have is they'll be tolerant.

So meaning the side effects for them are going to be much less than it would be for someone else. So I want the drugs kept in a safe place. I want them to bring the medications in with them at every visit.

And the reason is because we're going to count the pills to make sure you're taking them correctly. And if you're not, it means we need to do more education. And if there's too many, it means maybe you don't need as high a dose.

If there's not enough in there, it means maybe you're taking more than we prescribed and maybe we're not prescribing enough. And so those would be the two things that we'd be looking at. I think we do a thing which is called an agreement, and it basically explains what your responsibilities are.

And that's to keep the medications safe. That's to use them as we prescribe. That's to call us if they're not working or if there's a problem with it.

My expectation is that if things aren't working, the medication is not managing your pain, you should be contacting us. If you're having side effects from the medication, you should be contacting us. Could one of the barriers also be that people are hesitant to call in? Because I've had patients who come in, they say, well, this just wasn't working.

And so I stopped taking it and I'm looking at my notes. It's like, well, I haven't heard from you about that. So I find, actually, I think my patients are really good at emailing more than calling.

And they'll drop an email in here, would be my chart. But I'm used to getting emails and usually they're open by one of the nurses in clinic. But basically, I want to hear if it's not working because it should be working.

I want to hear if you're finding that the burden, the medication is worse than the benefit. So you're having, you're feeling sleepy all the time, you're throwing up, you're constipated. I want to hear about those.

I'm going to randomly do a drug screen on you because I want to make sure the drugs are there. And I want to be able to demonstrate that you're using them appropriately if there's a problem in the future. And those will be pretty randomized.

And I think the big thing that when we're managing pain medications, I'm also looking at you. I want to see your function get better. And if we're giving you pain medication and you're hurting too much to get out of a chair, you're too sleepy to read the newspaper, your quality hasn't improved, then these may not be the right medications for you.

But we want to make them safe. And the first thing is you have to use them appropriately. If there are questions, I don't want you using them unless you understand how to use them.

I want them to be safe for you. I want them to be safe for your family. And I want to be safe for the community.

And so I don't want those medications showing up where they don't belong. I think we've hit all the high points. Are there any questions about this issue that I didn't ask you that you think our listeners need to know about? I think that the barriers are going to be very different to every individual because they may have had a family member with a history of addiction.

They may have watched a loved one take a medication and do poorly on it. They may have known a friend or heard stories. And there's a lot of old wives tales out there about what things can do and can't do.

And that's why an open, honest communication with the person who's managing you or your loved one's pain is critical to success. And I'll spend 15 or 20 minutes making sure everyone understands everything because I want this to work and I want it to improve your quality of life. So Patrick, I really appreciate you coming out and talking about this.

And for our listeners, I think what's good about it as you listen to this is to know what usually happens, to know that you might be asked to sign a contract, do a urine test, bring your meds in. And your clinician, your nurse practitioner, your physician or your PA is not doing it because they think you're going to misappropriate your drugs or not use them correctly. They're doing it because it's the standard of care.

It's how we keep you safe. Absolutely. It's an agreement between you and who's prescribing.

Right. So this is normal operating procedure. It's a part of it.

It's to keep everybody safe and for you to have the best quality of life at the end of life with your pain management. Absolutely. Patrick, thank you so much for joining us today.

And I really appreciate your time. Thank you to Patrick Coyne for that fascinating interview. Please stay tuned for the continuing saga of Everyone Dies.

And thank you for listening. This is Charlie Navarette. And from rocker Neil Young, better to burn out than fade away.

And I'm Marianne Manso. And we'll see you next week. Remember, every day is a gift.

This podcast does not provide medical advice. All discussion on this podcast, such as treatments, dosages, outcomes, charts, patient profiles, advice, messages and any other discussion are for informational purposes only, and are not a substitute for professional medical advice or treatment. Always seek the advice of your primary care practitioner or other qualified health providers with any questions that you may have regarding your health.

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