5.10 Professor Neal Maskrey - Rebalancing Medicine

Aural Apothecary Series 5 Episode 10

Welcome to the Aural Apothecary Podcast. My name is Jamie Hayes. For this episode, we're joined by Professor Neal Maskrey. Neal is a professor of evidence-informed decision making and a retired GP. We will welcome Neal in a moment as he shares a drug for our formulary, his career anthem, and recommends a book for the Aural Apothecary library.

For our micro discussion, it's still a Sunday Times article from the start of this year: "the NHS is flat lining, here's how to save it right now" by health editor Sean Linton. For the observant of you, a few bottles of our Aural Apothecary NHS tonic we're given a limited-edition release to celebrate the 75th birthday of the NHS. Did you spot it? But first let me welcome my two fellow Apothecaries. STC is in Bournemouth and Gimmo is in Cardiff. Welcome both

Gimmo: Evening, how are you doing?

STC: Yeah, good.

Gimmo: I was going to mention, I mentioned last pod, my dad has had a stroke and I thought I'd just mention it because we've talked about shared decision making a lot on the pod.

And so I've experienced or observed first-hand, I suppose the impact of a lack of, because he's had great care. It's been pretty good. I think probably clinically, all the guidelines have been followed. When he needed scans, he's had them, he's had physio. But, it's being done to him, not with him is the only way I can describe, and he's getting very, sort of, frustrated. So, even though he's getting good care, he's getting frustrated and he is just a bed number it feels like, so I was just going to mention that, because, we've talked about it a lot this series and I've seen it first-hand and it's really frustrating.

STC: So, Paul, is it because he's an Aural Apothecary listener, that he's frustrated because he's heard all the stuff that we talk about all the time? Like, my parents are fed up, if they ask me anything about their health, I'll go, "well, you need to ask them what the BRAN is, don't you?" And they're like, "remind me what that is."

I was like, oh, for goodness sake. "Benefits, Risks, Alternatives, doing Nothing." So is it anything to do with that or is it just genuinely...

Gimmo: I'll tell you one example is, I won't go into the clinical details. But one of his medications was stopped quite appropriately.

But there was no conversation with him about him. It was just, wasn't there in his pot one morning. And there was no one for him to ask about what was happening and why it wasn't there and what the reason was. And it's little things like that that can sound trivial, when I found out it was stopped for the right reason, but it’s just, there was no conversation about it.

So, yeah. So, and you get to see the impact that has on someone who is used to being in control of their life, having that control taken away.

STC: Okay. Here's the thing, do you remember that you two took the piss out of me when I used the analogy about people in a hospital not being in their own habitat? Do you remember?

I said they were like zoo animals. Do you know that you two took the piss out of me? Has this got something to do with it?

Gimmo: Yeah. I think it's spot on. I think it's spot on. Okay.

STC: Hopefully he's getting better. And also, your mother-in-law, because she also had a fall, didn't she?

Gimmo: Yes. Yeah, she's home, so that's good. So, sorry, that was on a bit of a downer, but on an upper, we had a conference in work today. I work in quality improvement and it was a celebration of all the projects that we've done over the last year, so it was really good to, to get involved in that.

And, it's been a busy week. How about you, Steve?

STC: I'll give you another parent story, then. I got a phone call from my dad about 11 o'clock, last week, I think it was the week before, really panicking. And I thought, oh, here we go. And he said, Oh, you've gotta help us, your mum went to take a Senokot tablet and I, we think she's taken my hearing aid battery, and obviously we shouldn't laugh, but, so, I'm calmly looking it up and thinking that's fine if you know if, unless you're a child, et cetera.

And then basically about five minutes later he went, oh, it's okay. I've looked in the bin. She hasn't swallowed the battery, I don’t know what she has swallowed because the Senokot is still here. But anyway, that was a bit of fun.

Jamie: Have you got their consent to share that story?

STC: Yeah, and the other thing, you know, I hate NHS terminology, so this is no word of a lie.

I heard it on a podcast when I was driving to a meeting and then somebody in the meeting used this terminology. So, do you remember during Covid they always used to talk about the Covid cell, and I used to think that was really weird, you know? And now, instead of a group that are getting together to make decisions about stuff, and because of all the recovery plan and all the issues around workforce and workload, they said, oh, well take that to the “war room”.

And I said, what? And, and I hadn't heard it until that point. And that's the second time in one day that people were talking about a war room. Has anybody come across that yet in the NHS?

Jamie: Yes. Yeah. It's wrong. It's been for a while. Okay. So public workshop in Porthcawl YMCA last Friday night, talking about BRAN.

Great turnout as well. Great conversation with U3A crowd. That was great. And then look, so I'm going to bring up, I've got a parent story this time for a change as well. NHS birthday on the 5th of July. It was Mike Hayes's birthday on the 5th of July. Also, he's 84 years old.

So that day I went to the NHS 75th birthday conference set up by the Bevan Commission, and listen to this for a stellar lineup. Professor Sir Michael Marmot, Lord Nigel Crisp, Professor Sir Chris Ham, Baroness Finley, Dame Sue Bailey. Professor Donna Hall, Professor Sir Don Berwick. Professor Sir David Haslam. And Professor Derek Feely, chaired with style by Aural Apothecary Alumni and Bevan Commission co-chair Chris Martin.

So, here’s a quiz question for you. Throughout the two days of the conference, take a guess who had nearly, if not more, mentions, as Nye Bevan. Who do you think they mentioned?

STC: Wes Streeting? No, he's Welsh. Oh, not the person that can't be named.

Gimmo: I'm not going to say it.

Jamie: Julian Tudor Hart.

STC: Ah, okay. Ah, the episode that needs to be made,

Jamie: Julian Tudor Hart. There we go. That story's for another time. Let's move on. It's our great pleasure to welcome Neal Maskrey to the Aural Apothecary. Neal was a general practitioner on the East Coast of Yorkshire for about 20 years, the last eight of which he also worked for North Yorkshire Health Authority helping to develop primary care in the county.

He then spent a decade as the medical director of the National Prescribing Centre, followed by becoming program director of the Medicines and Prescribing Centre at the National Institute for Health and Care Excellence. Gradually, Neal worked out that understanding how humans make decisions was a very important thing, and that making decisions for populations is very different from making decisions for individuals.

And finally look, and I mentioned it last time, Neil is a mentor, wise council and friend to many of the listeners of this podcast. Welcome, Neal.

Neal Maskrey: Oh, bless you, Jamie. I'm a big fan of this podcast. I've followed it from series one, episode one, but I still have Clare Howard as an earworm in my ear when she said, 'it's all a bit blokey."

Yeah. I've got news, Clare, with me as the guest, it's 'old-blokey'. Yeah. We've been working to try and keep it in the present, and, and look to the future rather than in the past. So, you have come across ChatGPT guys?  There's an artificial intelligence thing. So, I put into ChatGPT a sort of opening, opening remarks for a podcast with some apothecaries, and this is what I got out.

"I'm exceedingly gratified to have been afforded the honour of addressing such a distinguished assembly. I trust that the discourse I shall present will prove enlightening and perhaps even edifying as we consider the virtues and foibles of our society. With all the perspicacity and wit can muster." Ain't that great, but it took ChatGPT about six goes, and I had to put it in the style of Jane Austen before he got anywhere near what was required.

Gimmo: I think that's the first time we've had the word perspicacity on here as well. I can't say it. Yeah. Just as well.

Jamie: So, Neal, look, if we bumped into in a bar, a pub, or a coffee house, what would your story be? Now I've got a little bit of insight or we've got a bit of insight because you've recently been working on your story.

Tell us more.

Neal Maskrey: Well, I spent about 10 years trying and failing to write a book. And I finished it two weeks ago. And sent a draft around to a few people, including Jamie, who's passed it on to you guys. So, I'm in the market for a literary agent and a publisher. If anybody listening is interested, give us a shout, and if all that fails, I'll self-publish on Kindle.

It's called “Rebalancing Medicine”. So, it started out as we found cognitive psychology so helpful in understanding decision making. And it started out as a sort of description of how cognitive psychology helps us understand how decisions are made, why there are differences between the evidence and what people actually do.

And it was an absolutely terrible attempt at a book. Nobody would've read it, including me. And then I had another go and it, and it turned into a bit of a textbook, and me telling people what to do, and that was hopeless. So finally, I worked out that telling stories is good. So, we've ended up telling stories.

 It needed to be personal and needed to be about stuff that's happened to me and to people close to me, as well as some stories about key things that have happened in medicine and so on. So hopefully it's a sort of a, 'this is how it's been for me, this is how medicine has ended up in, in this situation, this is why it's not great in some aspects, and this is what we might do about it.' So we'll see.

STC: So, Neal, before we rip into the book, no, I'm joking. But what I find strange is, because I've only met you a couple of times, but I've been an admirer of your work for a long time. And, as in your written work, when you've written in journals or when you worked for the NPC, for example, so I found it slightly strange then when you said that you found it so difficult to write the book because you've always been so eloquent.

And I don't just mean eloquent, but I am also a fan of analogies and you've done some brilliant stuff in the past. And the one I remember most about is RNLI. And this idea that, you know, information has to come from research, hasn't it? Then it has to go to national, then it has to go to local, then it has to go to individual.

And that's still with me. And I always quote that and say, that's Neal Maskrey, but, so you did lots and lots of that. So, I've just found it surprising that you found it so hard to write a book.

Neal Maskrey: Well, I guess I was working hard at it to try and get a format that would be a popular science type thing. So, this isn't any sort of a technical thing about the practice of medicines or prescribing or evidence base, this is a story that's trying to grip people's hearts and minds.

So, slightly out of my comfort zone, I guess, to, you know, to get there. And of course, things like work and family and little things like pandemics get in the way. So, yeah and there's always too much to do, isn't there?

Jamie: So, I've read it, Neil. I think it's great.

And, and so the literary agents out there should be beating a path to your door and I expect to see it in an airport maybe when Steve and I are flying out for the World Cup in a few months, maybe a bit soon. Okay. But I expect to be seeing it on and do you know what? That conference that I went to last week, that's what it was crying out for.

That we need to rebalance medicine. So, I think you're definitely onto something, it's a great read. I read it in three sittings, one on the train, and then two when I was back home.

Neal Maskrey: Oh, thank you Jamie. That's lovely to hear.

Jamie: Can I share something with you?

It's another parent story and I did ask Neal this, as soon as I read it, I thought, oh, Mike Hayes, 84 years of age would love to read this. So, I passed it on to him. So, he sent a note back to you, Neil. Okay. And here's the note. And so, here's the context, it's 1961 to 1965 in Sully Hospital. My dad had recently graduated from Cardiff Uni with a microbiology degree. He was working as a research assistant to the consultant pathologist at the time. And his area of research was Farmer's lung, and then my father goes on, “then one morning, and unannounced, a sharp suited gentleman, entered my lab and without stretched hand, introduced himself as Cochrane, Archie to friends”.

“He grabbed a lab stool and said, quite simply, right, I know nothing about your subject, bring me up to date”. My dad goes on to say he tried his best, and Cochrane seemed satisfied. He did not make a single interruption, but asked very politely, how do you know you're adopting the right approach? “Thereafter, every three or four weeks, he would pop into my lab and ask for updates.

I soon got to know his interests were of methodology. Proper meaningful controls. Compared to his research teams, we were minnows, but he was still keen that we were doing things properly. He didn't like loose ends”. My dad goes on to say, he did make me think, never made me feel small, had a very light touch when admonishing others. And I soon looked forward to his flying visits and the frequent social evenings at his home when he entertained cohorts of overseas medics over here to further their knowledge of either research methodology or tuberculosis.

So that's my dad's memories of Archie Cochrane. So, you mentioned him several times for obvious reasons in the book.

Neal Maskrey: That's lovely, isn't it? It is just great. Well, I can tell the story back. There's a tale in the story about the discovery of penicillin and lots of that was going on in Oxford, when Howard Florey picked up penicillin with his team, when Alexander Fleming wasn't making much progress from 1928 until Florey came along in about 1940. And there are people in Oxford who have met several members of that penicillin team who were still around. And Richard Lehman was talking to me about some of the personalities in the penicillin story that I've included a bit in the book, and so far, nobody's telling me I've got it wrong, so fingers crossed. We'll see.

Jamie: My dad did ask how would Neil like feedback?

Neal Maskrey: An email is always good. I do email.

STC: Yeah. I also, I didn't manage to read all of it, but I've read the second half because I figured that was the bit that, you know, was where you'd really come out fighting in relation to how you thought we might be able to move it forward. And I suppose it was as a group of people who have spent most of their, however many episodes we've done, talking about the need for using evidence base, but being very, very grounded in the idea of shared decision making and people's values and preferences.

That comes out very, very strongly. And having now spent the last seven years working in general practice, knowing now that, I knew you were a GP, but I now see the connection there, because I see it in my own practices. I see that value and I suppose the bit, that is the tricky bit, isn't it? And you are good enough to come out and say, well actually, what are we going to do? Because we've got 10% of all the healthcare posts that are unfilled. And it's not just here, is it? It's around the world. And therefore, we have to have a good, close, hard look at what we are actually doing, what people, you know, the whole wants and needs thing essentially, isn't it?

And so yeah, and there were overtones probably, I guess like the David Haslam book where he is saying, well, you can't have everything. And it's that kind of grown-up conversation that I think we don't know how to have , do we, we don't know how to get the public engaged in the idea that, well, maybe the preventative stuff is going to need to take a bit of a back shelf because we need to deal with all this acute stuff, or we need to deal with all the backlog of all the operations.

But as soon as you start talking to anybody, I guess it's the whole world of being a bloody politician is that everybody is just is interested in their own little world and therefore you can't get enough people to see further than the end of their nose.

Neal Maskrey: The whole thing isn't overly complex. Well, let's take a couple of big things, let's take uncertainty and probability. So, we do the first modern randomised control trial of streptomycin in 1946. And that was really, you know, a great triumph, but it was also a missed opportunity because we then explicitly have people who were in the streptomycin group who didn't get better, who died.

And we had people in the placebo group who did get better. And the big lesson from that is that you can't predict what's going to happen to an individual patient. There's stochastic uncertainty, unresolvable uncertainty. And so, the whole practice of medicine is based upon probabilities. And we're trying to improve the probability of a good outcome rather than guarantee it.

But because we're based on science and technology, and people believe in new science, new technology, it's bound to work, and we build the whole thing up. And actually, it's all built on really quite shaky foundations. And if we talked more openly about probabilities and less about certainties, I think that would be a good start.

But we're a long way from recognising that amongst healthcare professionals. And I think, Jamie, about the public as well. It's Jamie's thing about 'most medicines don't work for most people.' Although I've got one later that does.

Jamie: There was a statistician in the audience on Friday night and so he wanted have that very conversation. Gimmo, what have you got.

Gimmo: You know, I want to thank you Neil. The NPC and the work that you and others did there was a huge influence for me. And it comes back to the work that we're all trying to do. We talk about, on the POD, around behaviour change and stuff, and you and the NPC were pioneering that sort of stuff.

You started off with ChatGPT, and one of the things I remember from some of the sessions we used to have is, you know, you can't possibly synthesize all the information that's available to make a decision, but now we've got something that maybe can, and so, there's two ways to look at ChatGPT. It's going to take over the world and kill us all, and we're all going to be slaves , or actually it can work with healthcare professionals to enhance our decision making. I'm in the latter camp. But a little bit worried about the former camp, which is why I've got a shed full of beans.

But, I just wondered what you thought about it, you know, as someone who's worked in this field and probably everything you've done could be turned upside down.

Neal Maskrey: Well, I think the jury is out, isn't it? I think we have to, you know, sit back and wait and see.

I think there are optimists and there are pessimists. You might envisage one future where, the generative artificial intelligence is really starting to make all of that boring basic science live , because it can integrate the science with individual patients.

So, there's a better link between learning all of that knowledge, the Krebs cycle yet again, with what does this mean in the clinical setting? So, generative artificial intelligence might be a great bridge, but I think it's just too soon and I'm probably too old.

We need some nine-year-old to tell us where this is going to go. But undoubtedly, we've missed opportunities to make those bridges. The original Sackett definition of evidence based medicine in the BMJ in 1996 was bringing in evidence to improve decision making for individual patients.

And again, you know, it was another sliding doors moment. We missed the opportunity to demonstrate actually, you know, just how to do that. And instead of showing people how to do better consultations, what we ended up with was, is 400 clinical guidelines and 8,000 systematic reviews in Archie Cochrane's library.

So, will, generative artificial intelligence help with all of that or will it just make things up because it too can't make sense of setting the evidence in the context of individuals and what they want. I think there's still going to be that human-to-human connection.

Jamie: So, Neil, you mentioned sliding doors moment there.

I've tried to tell this story before on the POD , but I want to hear it from you because it's your story. So, canoe man?

Neal Maskrey: Ah, oh, dear me. So, you remember Rofecoxib, the, designer NSAID that was supposed to reduce massively the GI bleeds and perforations that NSAIDs potentially cause, and that got withdrawn from the market because of an excess of cardiovascular events.

And people then started to look at other nonsteroidal anti-inflammatory drugs for their effects on the cardiovascular system. And a systematic review was published in the BMJ that showed that as far as we could tell, lots of the non-steroidal anti-inflammatory drugs did that. The exceptions being ibuprofen at standard doses and naproxen and that still is the case. So, we were looking at the data at the national prescribing centre and despite the fact that there'd been this systematic review in the BMJ showing that there was this problem with the other NSAIDs that people really hadn't recognised, the prescribing hadn't changed. And the Committee on Safety of Medicines had issued a warning to prescribers and the prescribing hadn't changed. Because I'd done the cognitive psychology stuff, I was sitting there for about 20 minutes looking backwards and forwards because I'd prescribed some of these non-steroid anti-inflammatory drugs to lots of patients myself. And I was finding it really hard to get to grips with the fact that it was a problem, that we needed to do something about.

Nobody else seemed to be doing it. So, on the back of an envelope, I worked out that we were probably creating 2000 avoidable or premature cardiovascular events through our use of NSAIDs that weren't naproxen and ibuprofen at standard doses. And I thought this might be quite a big thing.

So, I talked to the MHRA, I talked to our sponsor at the Department of Health. They all agreed with me that I was, you know, on the money here. I wasn't making this up. And so, we wrote a prescribing bulletin. And we did quite a bit of preparation, because we thought 2000 avoidable cardiovascular deaths might be quite a story.

So, I had my hair cut and I pressed my suit and I'd got two clean shirts in the boot of the car. And on the day that we published the MeRec Extra, the thing that was on the front page of the newspapers was 'Canoe Man'. This sad, terrible family tragedy of this guy who'd faked his own death, leaving a damaged canoe on the beach in the northeast of England and actually lived in the attic of his house.

I mean, it's a horrible story because this couple had got teenage sons who had been told that their father was dead when he was living in the attic. And eventually, he jumped ship and went off to Panama. His wife went with him, they were going to buy a house in Panama.

The Panamanian estate agent took a picture of them and put it on the web and suddenly this ruse, this horrible thing was exposed. Anyway, we never got a look in, in the media. The Daily Mail never came knocking and all of my media preparation was completely wasted. So, we ended up with a very nice, natural experiment of what happens when you do academic detailing and publish a bulletin on prescribing, it's in the book.

Gimmo: Maybe want to think about when your press release for your book goes out.

Neal Maskrey: Yeah, indeed.

STC: Well, yeah, that is the thing about the press, isn't it? So, I've actually been in conversation this week with a journalist who had contacted, via something that happened through the Academic Health Science Network who then listened to the podcast, who then asked if they could talk to me, plus one of our previous guests about the world of structured medication reviews and polypharmacy.

And without going into much detail at the minute, we've left her with so much stuff that she's like, but I don't know how to tell this as a story that the public understands , you know, and I'm trying to explain that we need to get the public on board and that they have got a choice and that their views and experiences and things are important.

And, but she, she's saying, well, I don't know how to pitch it to the Daily Mail, you know, to get it as a story. I don't know how to get it through the editor. And so, and then I feel like I'm not doing a good enough job at being passionate about the importance of problematic polypharmacy. It's a real challenge to get the public involved to understand where we are coming from.

Cos, it is complex, isn't it?

Neal Maskrey: And we've got a long way to go. There's a chapter in the book called Mavis Like Medicine. My Auntie Mavis, 90-year-old Auntie Mavis has taken over from my mother as the barometer of how the NHS is functioning. And, I won't lead on too much, even I struggle sometimes to persuade people to do the sort of stuff that you guys talk about all the time.

You know, what matters to the patient here. It's still tricky, even in a great care home.

Jamie: Yeah. Before we go on, can I give you a, "you were right". Once in a decade. Yeah, no, you were right. And I remember when you came into the NPC and then sort of became Medical Director, there was a slight change of attention to detail. And you were very nervous, weren't you? You and Jonathan, very nervous about what people were saying on behalf of the centre and the unit, what people were writing. And at the time, I was thinking, you know, that may be a bit... because it'd been working fine up until then as well. And I thought maybe a bit over the top, but boy, it came back to bite us, didn't it?

We were both involved in that court case. Indeed. And where every email that we'd sent it turns out, was all retrievable. And every document, I was blown away by.

STC: Imagine the WhatsApp messages.

Jamie: Well, indeed, I was blown away by the research and the evidence pull that they did for that case.

And I just thought, wow, it was all there, wasn't it?

Neal Maskrey: We were very keen and it was, we don't want to be appearing on the front page of the Daily Mail and we don't want to get involved in judicial review because we were a tiny, small unit with a tiny, small budget and we were very keen to avoid getting sucked into that just because we then spend all of our time and effort and resources on refuting, either against the media or actually in court. So, we did put a lot of effort into making sure that what we wrote and what we said was defendable. But yes, it was a bit of a shock to see an email that I'd written 20 years previously appear in my inbox with a, "we're going to court about this."

Yeah. Yeah.

Jamie: Who's keeping those?

STC: We should just say for the non-healthcare listener, that when we talk about the NPC, this was the National Prescribing Centre that Neal was the lead for, and it came before NICE, really.

And then sort of got subsumed into it. But, for the purposes of non-health professional people, it was a great resource that lots of us talk about, about how good it was because it looked at the evidence and it tried to help clinicians to understand it, to then be able to put it into language that they could then discuss with their individual patients.

So, Neal and Jonathan Underhill, who you might remember, we've had on the podcast, they were very heavily involved, plus many others, but Neil led it and it was a wondrous thing. And that's why we go back to it. Not because we're all looking backwards, because we all believe in looking forwards.

But the structure of what, of how it went about it hasn't changed. And, you know, you can't make decisions unless you know what the evidence is. But then you need to be able to discuss it and put it into the understanding of that person's values and preferences. So yeah, that's why we go on about it so much.

Neal Maskrey: My one regret is that we didn't do a little bit of evaluation of what was going on at the time. But as you say, Jamie, I think a day in the witness box in the high court and winning that case, it's probably a pretty good evaluation that what we did was good. The judge was very kind in his remarks and his summing up about the stuff that we'd done.

So, think we got away with it.

Jamie: Yeah, and I mean, we talked to Jonathan about this quite frequently, but the NPC, not the car parks, as one of our dear friends, Steve Willis would always ask me. He says, you still work, you still working for those car park people? Steve Willis, RIP. Jonathan and I chatted about how good that training cascade was and how good that training network was.

I think one of the top things I've been involved in in my career without I doubt.

Neal Maskrey: Well, we had a great bunch of people and you know, the person who doesn't get enough credit and all for all that stuff was our chief exec, Clive Jackson. Clive was, you know, really ahead of his time. I think he pulled a great team together and then stood back and let us get on with it for the most part.

And, you know, bless him. I saw him a few months ago and it was great to see him looking so well and happy.

STC: The last thing I just wanted to say before, perhaps we move on, I often give Jonathan Underhill a hard time about this, cuz as you know, he works as a consultant for NICE. But you beautifully talk about it in the book about this thing we, let's call it the terms and conditions shall we, of NICE guidance and this idea that if you look carefully, like in the terms and conditions of all the stuff you ever bought, that you never read but you just signed at the bottom to say that you read it, it does say, even though the evidence might suggest that we'd strongly suggest you consider or offer this medicine to a person, even a statin for example, it does quite clearly state that the clinician does still need to think about it and to use their clinical judgment. But that's the bit that's getting lost, isn't it? And that's what your point in the book very clearly puts across, like you've just said before about all these sliding doors and we missed an opportunity. We missed the opportunity, the terms and conditions should be in font 40 on the front of every guidance, not in font seven on the last page of the guidance.

Neal Maskrey: We're still missing that opportunity, if most people don't read even the NICE guidelines, so they don't see that paragraph at all. And even those who see it, it doesn't impact upon their frontal cortex. They see the instructions in the guideline to, to offer or consider, and they follow them as the way to manage that particular condition.

But actually, what people do use, are the British National Formulary and Clinical Knowledge Summaries, and there's nothing in those that support shared decision making. Not even a statement that says this doesn't supplant individual decision making, taking into account the values and preferences.

There's no patient decision aids in the BNF, for example. So, there's, just in terms of the technical support that we are providing for people, we're a long way from where we could be.

STC: Hmm. That's a very good point actually.

Gimmo: We have chatted about this before, but you know, I was one of the sorts of people who used to go along to Jamie's and others workshops, who were cascading a lot of the NPC stuff.

And then was tasked with sitting in a room with a GP trying to pass out that information. And I think, you know, we did get it wrong sometimes in the way we messaged it and I think that's what happened on a bigger scale, wasn't it? It sort of, the evidence-based movement, got slightly twisted from here's some evidence to help you make a decision ,to here's the decision you should make in these circumstances. And, I think, we veered on and off that track ever since. Because, you know, it's just difficult, isn't it?

Neal Maskrey: I'm just back from holiday and I read the most wonderful book on holiday about just how to blend the two together. And I don't think anybody's mentioned it on this podcast yet. It's not in my book. I've got another book to come. 'A Fortunate Woman' by Polly Morland, it's amazing.

STC: Oh, you can't say that.

Neal Maskrey: Well, it's, it's wonderful. It's terrific. It's the best book.

STC: Yeah. You, you are far too eloquent and intellectual to use the word like amazing, Neal.

Neal Maskrey: But it stitches together these two things better than anything that I've- it's the story of a country doctor in the Wye valley just before the pandemic and during the pandemic. I won't spoil the thing, but it's been way up in the non-fiction charts and already listed for non-fiction prizes.

And if somebody doesn't mention it as their book for series six, they're missing a trick. It's just the bees’ knees.

STC: Give it to us again.

Neal Maskrey: A Fortunate Woman. Polly Morland.

STC: Okay. Great stuff, Neal. We will probably, I'm sure, come back to these themes again later on in the podcast.

But for now, I'm sure you're aware that you get three things as an Aural Apothecary guest. And the first one that we're after is a desert island drug. So, this is for the Aural Apothecary Formulary. So, a drug that evokes a powerful memory from either your life or perhaps your health journey. So, what would you like to offer us?

Neal Maskrey: Well, I was going to pick Midazolam as a representative of those medicines that help us through horrible things like procedures and all that sort of stuff. There's a great story involving me, midazolam, the Queen of the Belgians and about six paramedics and a couple of ER doctors, but I'm not going to tell that story tonight.

Okay. I'm going to pick Imatinib for chronic myeloid leukaemia because it's a great joyous story of drug development.

STC: Good. We haven't had a NIB. We've had a MAB , but we haven't had a NIB .

Neal Maskrey: And I did pay a small part in smoothing its introduction into UK practice. So we go back to the late eighties, early nineties, and there's a young oncologist in Boston called Brian Drucker, and he, he's got a research job at Harvard.

So, he's clearly, you know, very bright as an oncology researcher. And his big thing is that cancers and leukaemias exert their effects because the cells divide quicker than non-cancerous, non-leukemic cells. And so, there's something that is switching these cells on. There's some sort of chemical messenger that's switching on cell division in these.

And he's making a bit of progress. All of this stuff happens with people standing on the shoulders of giants. It's not just his work. There's other research coming together from other teams and it's actually making quite a bit of progress. But his academic supervisor at Harvard isn't impressed.

He thinks it's unrealistic. And he's told he's not gonna get academic progression with this line of research. So, instead of kowtowing to his academic supervisor, he starts looking for somewhere else where he can carry on with this research. And he ends up in Portland, Oregon largely because, Portland, Oregon is great for running and great for cycling.

It's where Nike had set up their quarters. And basically, Brian Drucker worked, ran and cycled, and that was his life. He'd had some conversations with some pharmaceutical companies already, so there'd been a sort of an initial movement towards starting to create a few potential medicines that might work.

And pretty soon after he got to Portland, he made another step forward and he talked to a previous contact, a brilliant British-born biochemist called, Nicholas Leiden, who eventually, quite soon sent over some promising potential medicines and Brian was still trucking through the years of drug development.

And he ended up with one potential medicine called SD1571, which then caused hepatitis in dogs, which was another delay to getting this into clinical research. And eventually that's a red herring. So, by 1998, Brian Drucker and his team have got 31 patients with chronic leukaemia lined up for the first use in humans of this potential medicine.

And they were all living within 10 minutes of the hospital in downtown Portland. Now, some of these people were in their forties, they had young children. Most of them had had treatment with the standard treatment , which was interferon, which we all know is just a nasty medicine to have and take.

Indeed, some of them had been told by their doctors, I think we'll stop the interferon that's killing you faster than the leukaemia. They'd all had to put their affairs in order. They all knew that they had an 80% chance of dying within two years and nobody lived 10 years. And, you know, it's, it's an impossible situation.

And Brian Drucker started the trial with SD1571 in 31 patients and in three months, 30 out of the 31 patients had complete haematological remission. Their cancer had disappeared in 30 people out of 31. They looked at the 31st patient and this patient was taking an anti-epileptic drug, and they had a look at his reason for taking it, they decided he didn't need it.

They stopped the epileptic drug and he went into complete haematological remission. This is unheard of, this is a big, big thing. So, we fast forward to January 2001, and it's a wet January afternoon, and I'm in the NPC meeting room at Liverpool, and I'm meeting with some representatives from Novartis, the drug company, and they're trying to tell me how great their angiotensin 2 receptor blocker is.

I think it's Valsartan. And it was, it's a perfectly good drug. It's just not a huge breakthrough and no better than the existing angiotensin II receptor blockers. And, of course, you know, I'm trying to escape the meeting, and then there's a moment, a bit like when a patient puts their hand on the door and says, "whilst I'm here, could I just ask you?"

Cause then you're going to discover something really quite important, and then you stop and listen. And the equivalent of that was the guys from Novartis saying something like, thanks for all that Neil, whilst we're here, could we just show you these results that have just come through because they're pretty unusual and we've got a problem we need some help with.

And these were the extended trials of what had become Imatinib. So, what had happened was that Ciba-Geigy had been taken over by Novartis, and Novartis were going to pull a plug on the development of Imatinib. They didn't see it as a commercial opportunity and the patients petitioned the Chief executive of Novartis. Judy Orum was one of the leaders of the patients. And they persuaded Novartis to reinvest and to even accelerate production of Imatinib for these trials in hundreds of patients this time in Portland, in New York, and in London. And what we saw in those trials, it took me about five minutes to recognize that what they got was something that turned a condition with a 95% mortality rate into a condition that in 95% of patients, at least in the short term, was a manageable chronic condition.

And, you know, there are people alive today in that cohort from 1998. Judy Oram sits on the FDA committees when they're discussing new medicines for chronic myeloid leukaemia. This is fantastic work by Brian Drucker and actually by the pharmaceutical companies. It's at least as impressive a piece of work as Robin Warren and Barry Marshall for H-Pylori and Peptic Ulcer, and Françoise Barré-Sinoussi for the antiretrovirals for HIV.

Warren and Marshall and Barré-Sinoussi got the Nobel Prize and so your Scandinavian listener might need to wake up a bit, talk to their friends at the Karolinska Institute. Why haven't Brian Drucker, Nicholas Leiden and actually Judy Oram as the patient representative, acknowledging the work that patients put into these randomized control trials, why don't those three get the Nobel Prize for Imatinib?

STC: Wow. Fair enough. You know, we had a patient on recently who had cystic fibrosis and talked to us about, it was a very joyful episode about Kaftrio and we were saying about, you know, sometimes, myself included, can be quite scathing sometimes at the pharmaceutical industry for marginal gains.

But I think what we're all saying here is that when you see something that actually is a game changer, it, and it doesn't really matter how much it costs because it's such a game changer that you then gotta go with it and it's, we've gotta go with both, haven't we? We've got the marginal gains, but let's be honest, that's not a good use of money.

Whereas actually, if we can use the money for massive wins like this, and this is a great example, I didn't know the exact story of Imatinib, but yeah, you can definitely have the first NIB in the formulary because we've had a couple of MABs, actually.

Neal Maskrey: Just to finish up my little bit, Novartis had got 400 patients on compassionate use in the UK and that what they were worried about was 600 primary care groups in England.

Some of them say no when this drug came through licensing, which was happening at a record pace, so we sort of smoothed the path through the Department of Health, Health Service circular went out and, as far as I know, nobody got their treatment interrupted for commissioning reasons. So, that was my little bit. And it was only a little bit, but crikey, Brian Drucker, good man.

Gimmo: Well, I'm looking forward to your book even more now, Neal, because you tell a great story. And maybe that's your second book is the story behind the big drugs. You tell it very well.

Jamie: They're all in there.

STC: That's not a bad book idea actually, is it? Because there's lots of great drugs. You want to get James McCormack in there, I think on the editorial board as well. It's not a bad idea, actually. Ooh.

Jamie: And a Nobel Prize in sight. Now that we've got the considerable weight of the Aural Apothecary behind that campaign in Scandinavia.Yeah. We'll get our social team onto that.

Gimmo: Brian Drucker, you don't need to, you don't need to thank us.

STC: Right. Excellent. Yeah. And a great story. So, the second thing, Neal, is that we are after an anthem, a career anthem. So, what would you like to offer us for the Aural Apothecary Spotify playlist? That really is on Spotify.

Neal Maskrey: There was only one candidate. So, summer of 1970, it's almost ancient history, isn't it?

I had a summer job. I was waiting for my A-level results, so I had a summer job restoring a large garden attached to a house that had been occupied for a couple of years. So, there was a couple that looked after the house, there was the gardener and the housekeeper. So, I self-titled myself as assistant head gardener for the summer, knocking this house into shape.

But my dad bought a record player. Prior to then we'd only had the radio. And, I think he probably regretted it because the first record I went out and bought was the second album by Crosby, Stills, Nash & Young, 'Deja Vu', classic West Coast rock. And there were loads of songs on that, you know, it spoke to me down the years and one of which really in the last 20 years has taken hold. Cause 20 years ago, the dearly beloved Helen and I, got together here in Southport. And there's a track on that album written by Graham Nash when he'd moved from England and left the Hollies behind, and he was living in Laurel Canyon in Joni Mitchell's house with Joni Mitchell. And it was sort of domestic bliss for a short while, and one rainy Saturday morning, they went out for breakfast and Graham Nash persuaded Joni to buy a vase, an antique vase that she had admired in the shop.

And they went back to the house and Graham Nash sat down at Joni's piano and wrote, "I'll light the fire, you placed the flowers in the vase that you bought today." And there were bits of that song that Helen and I sang to each other from the early days here. " Two cats in the yard, life used to be so hard", and we had two cats in the yard for a while. Our cat and Helen's dad's cat when unfortunately, he passed. So, when we finally decided after 19 years minus three days to eventually tie the knot, last autumn. There was only one song to pick and we walked up the aisle together to get married to 'Our House' by Crosby, Stills, Nash, & Young

Gimmo: Classic.

Jamie: Very good.

STC: Wow. I must admit that I'm not a big Crosby, Stills, Nash & Young fan, but, musically I know that they were…. I only know 'Our House' by Madness, but that's because I'm a bit younger than you.

Jamie: You were born in the summer of 1970, Steve.

STC: I was born in the summer of 1970, so there is a link there.

Neal Maskrey: Nothing to do with me.

Gimmo: We go back full circle to my dad who mentioned at the start of the pod, because that's one of the albums I think that's in his collection. So, I used to listen to them as a kid as well.

STC: There you go. Yeah, they're incredibly tuneful. I mean, don't get me wrong, but I say excellent and we are looking for something that's got a personal memory and so there's nothing more personal than that is there, so thank you.

Neal Maskrey: We were lucky enough to see Dave Crosby and Graham Nash at the Philharmonic Hall than Liverpool last time that Dave Crosby came over to the UK. So yeah, lots of personal stuff relating to.

STC: Okay, well it's definitely, it'll sound great as we have, we always say it's a really eclectic mix of stuff in the Aural Apothecary Spotify playlist, so I know it will sit nicely in there.

So that's 'Our House' by Crosby, Stills, Nash, and Young.

Jamie: Very good. Our micro discussion next then, did you get a chance to look at the article in the Sunday Times, Neal, "the NHS is flatlining, here's how to save it right now?"

Neal Maskrey: I did, yes.

Jamie: And what would you like to add to what's gone before? And again, I think this is the latter half of rebalancing medicine that will be in all good bookshops within the next 12 months.

Should we read out what's gone before, STC? Should we do that again for the listener?

STC: Yes. Okay. So, this is for now called the #NHS75 Aural Apothecary Tonic. So, we've got: support, then trust patients as project managers for their own health (Graham Prestwich) ; treat the person, not the condition (Deborah Duval); all decisions should be shared (Alf Collins); communicate with patients better (Rachel Power); utilize community pharmacist more for diagnosis and treatment triage (Trevor Sylvester);treat mental health as seriously as physical health (Liz O'Riordan); manage the child to adult services journey better for children with long-term conditions (Louise Jenkins); better support NHS organizations to adopt evidence-based improvements in patient care (Paul Woodgate),; fund the lived experience sector to help other patients and clinicians (Louise Trewern).

Neal Maskrey: So, on the list, there's a couple of those suggestions that I would absolutely endorse, and I talk about them quite a lot in the book.

Number 10 is look after staff. And it's just some horrible, horrible stories about, you know, how things operate in some organizations still. And yeah, Charles Massey, the chief executive of the General Medical Council said, in November 22 “Doctors are not leaving UK practice because they've fallen out of love with medicine, instead, it is because they can't tolerate the environments in which it is practiced.” The problem is not their work, it's their workplace. And it's awful that we've got to that sort of situation. The one on the Times list “suspend inspections” I mean, I'd add, you know, cut right back on appraisal and revalidation and pay for performance. That sort of thing, a few weeks ago where an English GP, they got to submit 233 bits of data in a year in order to claim all of the allowances for their practice. So, there's all of that sort of over-inspection, over-coercive, industrialised approach to medicine. But, the one I would add to this, which is what you're after, the one I'd add to this...

Jamie: Can I just stop you there for a second, Neal, just to add to something and just build on that last point, because you've commented on the RCGP over-diagnosis group on this one a few times, and it fits with what you've just said, is that this concept of time needed to treat, yeah.

So, we've seen a few published articles on it now, but the time needed to treat. Do you want to tell us, explain a bit more about your understanding of that?

Neal Maskrey: So, this is Mina Johansson in Sweden. Come on, Mina, get onto the Karolinska Institute. It's such a great paper, I'm sure you'll put it in the notes.

And, so many of us wish we'd written this paper before it came out. Basically, it's to do with calculating the capacity that the system has to carry out the recommendations in, say, a guideline. And the latest bit from Mina and team is that they've gone through all the NICE guidelines and looked at the recommendations for providing what we might call lifestyle advice to patients and totted them all up and worked out how long it would take to provide that lifestyle advice to the target population as identified in the guideline and astonishingly, what they've calculated is that if the NHS gave up treating anybody who was ill, there still wouldn't be enough people to deliver the lifestyle advice that's included within those guidelines.

And we have to stand back and look at this, don't we? We can't go on heaping more and more and more onto a workforce and actually, you know, a population, who actually have different priorities. We had information mastery in the nineties and the two-thousands. But goodness me, we need to do something about the capacity in the system and marrying that up with the recommendations that are made.

That's the time you need to treat stuff, it's a brilliant concept. Victor Montori from the States is involved as well, but I've had some emails with Mina and she's very keen.

STC: Surely that's the heavy lifting that we possibly need, digital and AI to help us with? We're not saying that we don't need to get these public health messages out there, but it's the time involved and there are other ways of potentially doing it. I think that's what we're saying, isn't it?

Neal Maskrey: And the Michael Marmot stuff, you know, I mean, I'm not saying we abandon all prevention, but you know, why don't we do something about making decent food available for people at reasonable cost and enabling people to walk and cycle, housing, reduction in income inequalities. All of that might help, you know, children in their early years, as all of that stuff is as much prevention as the technical approach that dominates prevention, again with too much on the science and the technology, which inevitably ends up with false positive and false negative tests, which people ignore, and their view of prevention being a really good thing.

The problem is, of course, all this, you know, the social approach to prevention is longer term and we need a better concord out about how we go about these things, I think.

STC: And if you like the cut of Neal's jib of what he's talking about, then you should read his book when it comes out, quite simply.

Neal Maskrey: I'll let you know if it comes out, it's going to come out. Gimmo, what were you going to say, sorry.

Gimmo: Well, it was more back to the first point you made about treating the staff well, and I think today is the first or the second day of the latest junior doctor strike. And the headline that's portrayed is the junior doctors are asking for 35%.

And it's the same when they talk about nurses and stuff. But actually, when you look at what they're looking at, that's not what's bothering most people? It's what you describe, isn't it Neal? It's the, it's what they're being asked to do that. They know that they're spending so much time on crap that they're not able to treat patients.

And I mentioned that we had an improvement conference in my health board today. And so, I spent a lot of the last year talking to people like, what could we really do to help you? And I've come to the conclusion that, people joke about the bureaucracy in the NHS, and I've started to call it the sludge, but it's actually the biggest patient safety issue that I can see out there at the moment is the amount of time that people are spending doing stuff that doesn't add any value. That, not only doesn't add value because it wastes time, it just depresses the people who are doing it.

So, I'm spot on with you on that. I think, it's about, it's not just about making work a happier place. It's about removing all this crap that's just built up over the years. And I'm really interested in what you said there, 222 bits of evidence. I'll have to find that piece because, it's just, It's laughable, but it's not laughable.

Neal Maskrey: It's, yeah. If you didn't laugh, you'd cry. There is a great paper by Don Berwick , previously mentioned Don Berwick from the conference last week, Jamie. He talks about the three eras of medicine, you've got it in front of you, good man.

The first one would be the era where implicit competence was assumed, we all know where that ended up. The second era, we're in now, where the response to all the catastrophes there have been in medicine is this overdependence upon paperwork and inspection and data and all that sort stuff.

And he talks in that paper very eloquently about there needing to be a third era, where things are a bit more rebalanced, a good title for a book.

STC: Yeah, everything's reimagined, Neal, nothing's new anymore. It's just reimagined.

Jamie: So, Don Berwick's message to conference was, there's no hero coming. We are all in it together: patients, public, healthcare professionals. Don't be waiting for a hero cuz they ain't coming. And then, this morning on breakfast tv, the junior doctors were on and it's the first time really that they've used, they're normally going with relative rate increases that they're asking for, aren't they? They're asking for 30 odd percent. So this morning the junior doctor representative from the BMA, I think explained that, actually what they're asking for is to move from 14 pounds something an hour up to the outrageous number of 19 pound something an hour.

And when I heard that, this morning, I thought, that's the message. Cause who begrudges your junior doctors earning 19 pound something an hour? Rather than a 30 odd percent increase, you know? And so, we've spent a career of talking about relative risk reduction and absolute risk reduction and harm.

STC: And guess what?

Absolute makes a lot more sense, doesn't it? If you give it as the absolute, then actually it makes a lot more sense.

Jamie: So, Neal, we interrupted you there. What were you going to give us as your final addition to the tonic?

Neal Maskrey: Well, it's really an extension of what we were talking about, earlier in the way that guidelines are currently constructed.

And I would ban guideline committees from making recommendations on a do-not-do offer/consider basis. I think guideline committees should review the evidence, describe the benefits in absolute terms, in just the way that we've just been talking, you know, 14 pounds to 19 pounds, and then help patients and healthcare professionals to see how that might improve the consultation, what would that information, you know, let's give some examples of how using that evidence in a consultation will actually help with a better decision, rather than do not do population level type stuff. So, ban guidelines from making recommendations.

STC: Okay, I was going to say, my word, I was trying to come up with a shorthand little phrase, so thank you for qualifying that. So ban guidelines committees from coming up with recommendations. So that's a blanket ban then, James McCormack says the same thing, doesn't he? I've heard James McCormack argue the same thing.

Neal Maskrey: Yeah. We've talked online and we've actually met face to face in Vancouver and you know, James is really, really, ahead of the game, in many ways, the Canadians are actually starting to do this with their primary care guidelines. So, it's not as if this is some, you know, airy fairy, mad idea. This is actually, you know, the future is present.

Gimmo: So did you say this is happening in Canada?

Neal Maskrey: Yeah.

Gimmo: So, so what's the response been of the clinicians there, then? Because, I can imagine some people welcoming it and I can imagine some people say, please tell me what to do.

Neal Maskrey: But that's right, isn't it? That's exactly why some of the guidelines and the evidence-based medicine stuff is so popular.

Even now, with doctors acquiring their expertise, because it solves some of their problems, it solves some of their difficulties. So, in a way we have to move beyond it and paint a picture for people, why doing the treatment for everybody is actually the wrong thing for some of them, especially when we end up with the multimorbidity stuff that we've talked about already.

STC: Okay. Definitely. That can go in. No problem at all.

Jamie: I think it's a great one. Very good. A big thank you to Neal for joining us on the Aural Apothecary and for sharing his stories, his desert island drug, his career anthem. That's it for series five. Thanks to all our guests who've joined us over the last six months.

Thanks, once again to the team behind the team. You know who you are. In particular, Jimbo Slough and Jacob Howard. Thanks to you, the listener. We know you continue to listen from all over the globe. As always, thank you for your time, support, feedback, and encouragement. We'll be back with series six after STC and I have returned from Rugby World Cup in France.

Yes, if you'd like to input your ideas and suggestions for series six, then we'd love to hear from you. STC will ignore most of them, but don't let that stop you.

Over to Neal now for the final ingredient.

Neal Maskrey: Well, the sharp witted and regular listeners will have realized that we haven't talked about a book. Other than my book, a book for the library and what I've picked is not a book. It's an online collection of writings about sharing personal experience of giving and receiving healthcare.

This is pulsevoices.org. It's a United States orientated website, run by Paul Gross and Diane Gurnsey. Paul is a teacher of family medicine interested in narrative medicine. Diane's his wife and an editor, and they started this in 2008. It's a free subscription. One email a week floats into your inbox.

You don't always have to open it. I would say I probably open mine about 50% of the time. If my heart or my head or both are two full, I don't go to it. But I'm always glad when I do go to it. There are anthologies, there are collections that are available for purchase, either directly from pulsevoices.org or on your usual online seller of things like books.

It's been a great comfort to me when I've been overwhelmed with the science and technology and the madness of the way medicine happens to read some of these stories because it's about how things happen in the real world, not how things are expected to happen for a population. And it brings me down to earth every time I find the time and the energy to open up the email, they will accept donations, but it's not obligatory. So, I've got permission from Paul and Diane and from the author of this piece just to read a short example that will hopefully bookend the series.

This is by Margie Hodges-Shore, and Margie teaches consultation skills in New York state, often working with people who are doing palliative care, both undergraduate and postgraduate learners. But, this isn't about her work. This is about her mother who has had a longstanding lung disease and being admitted to a big, very busy Atlanta hospital in the middle of a covid wave. She doesn't have covid, but she's been admitted in the middle of a covid wave, and it's called 'Living and Letting Go in the ICU'.

“As my brother and I stood at our mother's bedside, the nurses kept asking if we'd considered transferring her to the local hospice facility. They were reading my mind. How could they know how much I wished mom to have a peaceful environment in her last days and a good death? My brother, on the other hand, hoped that our mother would continue to have a good life.

She'd recently moved in with his family. He and his loving wife spent months cooking and caring for mom while she played gin rummy with their kids and dispensed wisdom and advice, welcome or not. I have a phone full of photos of them smiling and raising wine glasses over meals. They had plans to build a small backyard cottage for Mom as a way of meeting her increasing needs, whilst also respecting her strong opinions and fierce desire for independence.

My brother couldn't envision our mom dying. He could only see her living. Part of me was painfully jealous of his perspective. My mother had full decisional capacity. She'd already told the medical team that she refused intubation and chest compressions. Lung disease is often invisible to others. For many years, Mom managed her illness with sophistication and grace.

She took extraordinarily good care of herself, rarely looked sick, and frequently had to remind others of her physical limitations. She instructed her doctors and advanced care providers how to treat her. Four days into her ICU stay with her breathing ability deteriorating, my mother still retained full mental capacity.

My brother and I took turns staying at her bedside. I read out loud to her from 'The Sound of a Wild Snail Eating', a book she'd recently discovered and loved. I suspect that the story about a bedridden patient who found solace made Mom feel less alone and even lucky, I'll never forget the joy in her face as I fed her ice cream from the hospital cafeteria.

Later that night, she seemed restless. Worried about her comfort, I asked if she wanted medications. She was slow to respond, and I eventually asked, do you want me to decide for you? She turned her head, looked me straight in the eye and said clearly, "no, I do not." Next morning, she awoke confused, after orientating her to her surroundings, the nurses and I asked if she needed anything.

"A new brain would help", she scarfed, and this is where I most wish for a talented songwriter. The story deserves a love song. In a just world, my mother could have been or done anything she wanted, her exquisite observational skills, clean financial acumen, shrewd, critical thinking, and entrepreneurial spirit could have propelled her to the top of any organization.

Instead, she gave her family everything. I imagine that it was hard to parent me, a daughter she perceived of as being in a constant fight with the world. A Dolly Parton song might gracefully capture the relationships that developed over time and distance, climaxed in an ICU and continue today, a song celebrating complex love, grief, and gratitude.

At the end, there was nothing to fight. All I could do was to give her what she'd really always given me, unconditional love and support. Her last words to me were, "thank you, thank you, thank you, thank you, thank you." Critical care providers and nurses, and the intensive care setting enabled this, every day, critical care delivered in the midst of a pandemic. Where I'd expected to find exhaustion and numbness, I've witnessed remarkable care delivered with kindness. As grateful as I feel for the peace and quiet and care she received there, the gifts from our ICU stay are the ones I hold most dear. To the critical care providers and nurses who compassionately treat all patients, whether they're likely to live or likely to die.

Thank you. Thank you. Thank you. Thank you. Thank you.”