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We need to talk about death

You would think that death in healthcare, and the future prevention thereof, would be a worthy topic for investment. Sure, there is a well-established Coroner led system for recording preventable deaths, but a closer look reveals a story of concerning lack of clarity in terms of presentation and a dangerous lack of co-ordinated sharing of significant healthcare events that led to death.

Some of you may recall that several years ago we summarised some of the pharmacy related coroners’ prevention of future deaths reports on Pharmacy in Practice. I had for some time been frustrated that these reports were not properly categorised or shared widely. It is pleasing to see that some of the trade press have in recent years followed suit. The lure of a shocking headline or two has possibly become too tempting to pass up.

The reality of making use of these reports is fraught with difficulty and I would shortly find out that the lack of searchability by topic is just one of many significant problems with the system.

Dr Georgia Richards, and others, have been quietly building momentum around the topic of patient safety and specifically how to make use of the coroner-led prevention of future deaths reports to save lives in future. I was very fortunate recently to have some time to talk to Georgia and explore findings initially revealed in her PhD but also some of the broader opportunities to make much better use of these reports.

Dr Georgia Richards is currently an epidemiologist and health research scientist based at the University of Oxford. She teaches at the Centre for Evidence-Based Medicine in Oxford and also in the medical school. She teaches evidence-based medicine, evidence synthesis and research methods to the next generation of doctors. She is not a medical doctor and instead did an undergraduate degree in biomedical sciences in Australia. She then spent some time working in the area of pain management including some time working in private pain clinics.

“My honours thesis was looking at people that had chronic pain and the effectiveness of strong painkillers or opioids. I had an interest in opioid medication and pain medication, and I was also working part-time in a pharmacy. So that’s where my interest in pain and opioids started back in Australia. Between moving from Australia to the UK, I spent some time in the US. I studied over there for six months and got to see the opioid crisis first hand”.

“In 2014, I was intrigued by the United States’ approach to handling opioids, even before it was acknowledged as a crisis. This deepened my curiosity about opioids and their role in medicine. Subsequently, I pursued my PhD at the University of Oxford, investigating opioid usage both in the UK and globally. My focus was on identifying various types of evidence that could aid in averting potential opioid crises worldwide. That’s where my interest in Coroner reports began. I think that is around the time we began talking.”

My broad perception hitherto was that there is not much investment in this area. Generally, when there is a lot of money in a field, there are usually significant commercial benefits, but in this area, I don’t see that. There doesn’t seem to be much action in investigating deaths, understanding causes, or sharing best practices. It often seems to me like these issues are overlooked or completely ignored. Swept under the carpet.

I tried looking into Coroner reports a while back, especially in the context of pharmacy practice. I wanted to extract medication-related information and share it to promote best practices, but it was extremely challenging to search through those reports.

So, I started here by asking Georgia to define exactly what a coroner’s report is and also if my assertion about the investment side, or lack thereof, was correct.

“You’re absolutely right about the financial aspect. Funding is a critical point I want to emphasize, particularly coming from the chronic pain sphere. When I began my research in chronic pain in Australia, securing funding was incredibly challenging. That’s actually what led me to the UK. Surprisingly, it’s just as tough to obtain funding here. Around 2015-2016, I was attempting to secure funding in Australia for chronic pain research. Unfortunately, chronic pain wasn’t perceived, as you mentioned, like a blockbuster area such as cancer or cardiovascular diseases, which have substantial research and financial backing. These areas are considered safe havens for academics or clinicians due to the substantial funding they receive.

“My interest in chronic pain stemmed from my experiences in pain clinics. It’s a condition that’s often invisible, with no straightforward treatment, making it incredibly complex. The interesting part, and something worth sharing with your readers, is how I eventually secured funding. I reached out to numerous Rotary clubs in Australia. Generally, these clubs consist of older, predominantly male members from various societal classes. Before I left for the UK, I spoke to about 20 or 30 clubs. I asked them a simple question: ‘Raise your hand if you or someone you know has experienced pain.’ The entire room had their hands up, illustrating the widespread personal experiences with pain. One in five people, statistically, deals with pain. This experience was common for me, working in a field devoid of research funding or government support. I found alternative routes for funding, collaborating with Rotarians and individuals from the community who had firsthand experience with chronic pain.

“Initially, securing funding for chronic pain and opioids was a challenge. Now, the government is allocating funds for advanced technologies like AI-driven drones to distribute naloxone in different areas and supporting various sophisticated approaches in managing opioid overdoses. While I wholeheartedly support these advancements, there’s still much to be done in managing chronic pain itself. There’s a need for more focus on chronic pain management rather than solely investing in high-tech AI solutions. I won’t delve into the specifics now, but it’s a point worth noting.

“I wanted to stress the funding aspect. Based on my experience with chronic pain, securing funding was a hurdle. Now, as I shift my focus towards preventing death, particularly in this context, funding remains a challenge.”

“A Coroner’s report, taking a step back to view it from a higher level, pertains specifically to England and Wales. When a death occurs, annually averaging about half a million cases, 40% of these deaths are referred to the coroner. This referral transpires when the death is deemed unnatural, or the cause cannot be determined based on the available facts at the time of death.

“Subsequently, in about 40% of all deaths in the country, there may or may not be a post-mortem conducted for further investigation. However, irrespective of the post-mortem, the coroner assesses the evidence collected. Should there be a need, an inquest is held, encompassing about 18% of all deaths each year. The purpose of the inquest is to gather additional evidence, involving various organisations and individuals connected to the death. It serves as an opportunity for the family to understand the circumstances leading to the death. Following the inquest, a conclusion is reached, leading to the issuance of the death certificate.

“This process is more intricate than outlined here, yet this provides an overarching view of the procedure. During, before, or after the inquest, the coroner independently determines whether the wider public or relevant organizations should be informed about the death. If so, they produce a report termed as a ‘Prevention of Future Death’ report or a ‘Regulation 28’ letter, previously known as ‘Regulation 43’. For simplicity, I refer to these as coroner reports.

“The coroner report summarizes the death’s circumstances, its causal factors, and outlines the coroner’s concerns regarding preventability or necessary actions. While recommendations aren’t offered to maintain their impartiality, these reports are disseminated to involved parties or entities like local GPs, trusts, NHS England, or the CQC, depending on the death’s nature. These organisations or individuals are legally obliged to respond within 56 days of receiving the report. Failure to respond constitutes a breach of the law, a fact often overlooked or ignored based on my research.”

I wondered, if there’s a statutory requirement to publish or acknowledge something within twenty-eight days, could such an organisation or journalists for example easily utilise Freedom of Information requests?

“Yes, we’ve actually conducted such a study. It’s quite telling. In one of our studies, we looked into this issue. Professor Robin Vanna and Professor Anthony Cox from Birmingham—our Preventable Death Tracker team—comprised passionate volunteers from various parts of the country. Their focus was on medicines.

“Robin Vanna and Anthony Cox delved into responses to Prevention of Future Deaths (PFDs) or certain Coroner reports related to medicines. Interestingly, despite the legal obligation to respond to Freedom of Information (FOI) requests, they only received about a twenty to twenty-two percent increase in responses once they initiated the FOI requests. This data remains consistent with our overall findings on the tracker.

“Overall, across all Coroner reports we’ve observed, there’s a response rate of approximately thirty-three per cent for those published and available to the public. Even after Robin and Anthony submitted FOI requests, the increase in responses only brought it up to around thirty to sixty per cent, depending on the specific category—be it medicines, COVID-related, or other issues. Unfortunately, there isn’t a one hundred per cent response rate to Coroner reports, despite the existing legal requirements.”

These figures are stark but given the pressures on the health service perhaps not hugely surprising. I was also fairly alarmed to learn during this conversation that there is basically little or no money to do these coroner reports. When they get done, they’re very hard to search and then finally the ones that do get published don’t always get looked at.

My next question here was about the implementation of recommendations made by the coroners in these reports. Do the recommendations routinely get actioned within the required timeframe I wondered.

“I’ll conclude by outlining the process after an organisation responds, or if they respond. Once the coroner sends the report to the organisation, they’re required to respond within fifty-six days—though as mentioned, most don’t. All these reports and their corresponding responses then head to the chief coroner’s office in England and Wales. The chief coroner holds the responsibility to make these public. There might be some redactions, but most of these coroner reports get published on the government’s judiciary website. This process has been ongoing for over a decade, starting in July 2013. Despite these reports being available for ten years, no concerted effort was made to compile a database or analyse the effectiveness of these reports in prompting action.

“After my Ph.D., I created this tracker to centralize all this information. The question arises: Are these reports effective in preventing deaths? Whenever I raise this question at the trainings I attend, the response remains uncertain. I often ask how many lives these Prevention of Future Death (PFD) reports have saved, and the answer is always unclear. There’s been no funding or dedicated effort to sift through these records comprehensively to assess the actions taken—or not taken—in response. Responding to the coroner doesn’t inherently mean taking substantial steps to prevent deaths. This system is fraught with nuances and complexities.

“The aim of creating the Preventable Death Tracker was to compile all available information from the judiciary website into an accessible database. Being an epidemiologist, I delve into numbers, trends, geographical variations, and outliers, observing how these reports are formulated across various regions.

“Regarding the impact of these reports, when we focus on medicine or opioid-related deaths, we notice minimal responses. Furthermore, the responses vary significantly. Hence, there’s no definitive conclusion regarding the extent of changes triggered by Coroner reports. However, there are notable instances, like the Natasha Allergy Research Foundation.

“I’ve had a podcast discussion with one of the founders of the Natasha Allergy Research Foundation. While the PFD itself didn’t directly cause change, it spotlighted the issues, leading the family to advocate for ‘Natasha’s law’—aimed at preventing allergy-related deaths. These unique cases showcase that, yes, some impactful changes can stem from these reports.”

At this point in the conversation my mind drifted towards our own profession. I was thinking about the technical and professional aspects associated with dispensing. In most cases this remains largely a manual task although robotics is creeping in. The technical aspect of dispensing at its most basic involves putting a label in the box, accuracy checking it and giving appropriate pharmaceutical advice. Errors do happen and what I have witnessed across many years now in practice is a significant underreporting of incidents. The other aspect on my mind was the fact that if an error is reported in a pharmacy in Aberdeen, then generally speaking someone in Devon knows nothing about it. So, there’s a rich data set that’s not being captured. It feels to me like it is a problem that many simply want to go away. Do we as a profession hide behind our carefully curated self-anointed expert in medicines status to an extent here?

I wondered if Georgia had insights into whether the same pressures came to bear on all aspects of coroner reports related to the prevention of future deaths. I wondered if she agreed with my thoughts but also whether she could provide some hope in terms of potential future culture change.

“I completely agree with your sentiments. As an epidemiologist specializing in safety and harms, I often reflect on the lack of emphasis on these aspects, especially evident in clinical trials. Specifically, regarding opioids, my Ph.D. work frequently comes to mind. Surprisingly, most opioid trials rarely, if ever, document deaths, overdoses, or the real-life harms associated with their usage. Even our most reliable evidence from clinical trial research, including systematic reviews of Randomized Controlled Trials (RCTs), demonstrates a significant deficit in reporting safety issues and harms.

“This issue circles back to our initial point—that safety and harms aren’t seen as compelling topics to invest in, despite the undeniable risk to lives. I wholeheartedly agree with this viewpoint. I’d like to touch on the matter of automatic dispensing, playing devil’s advocate, considering its potential harms. For instance, at the J R Hospital in Oxford, where automatic dispensing exists, conversations with pain consultants revealed concerns. Patients not discharged after major surgeries often receive more opioid tablets than necessary. Studies highlight that the quantity needed for pain management post-surgery is often much lower than what these automated systems dispense. They lack the ability to personalise the medication quantity based on specific surgical procedures. While automatic dispensing minimizes drug-related errors, it falls short in tailoring pain medication to individual needs, potentially leading to long-term opioid misuse.

“I believe there’s room for improvement in this realm. While automatic dispensing offers benefits, especially in reducing medication errors, it’s crucial to address personalized pain management to curb potential long-term opioid abuse. My perspective isn’t anti-AI or tech-focused; rather, I advocate for considering safety and harms comprehensively within the domain of opioids and pain medication.”

Georgia’s point that it is not the AI or technology’s fault resonated with me. I asserted that we basically have more or less no idea data wise what happens to the medicine after it leaves a dispensing bench.

“Indeed, it’s a significant area that warrants attention. I’m particularly invested in opioids, and I’d like to shed light on a prominent movement driven by both government and practices nationwide—an initiative to de-prescribe opioids. On the surface, this approach seems sensible. However, during my Ph.D., I had the opportunity to attend the opioid de-prescribing clinic at the Churchill Hospital in Oxford regularly, accompanying an exceptional pain consultant named Jane Quinlan.

“One glaring aspect we observed within the de-prescribing strategy was the lack of attention given to its potential harms. An outstanding pain consultant, employed effective methods for helping individuals transition away from opioids. However, what often remained unaddressed were the unintended consequences. The extensive trials and government campaigns promoting opioid cessation failed to capture the potential harm experienced by individuals once they were home without their opioids. Rapidly reducing opioid dosages led some patients to seek solace in alcohol or other substances, resulting in different forms of harm.

“In contrast, ensuring a patient remains on a safe opioid dosage that allows them to function and contribute positively to society appears far safer than swiftly withdrawing their medication, potentially driving them toward harmful alternatives like alcohol or other substances. I realize I’ve digressed from the original topic, but it’s an essential aspect to consider.”

“It’s quite simple—a straightforward method to save lives and prevent needless deaths. Every day, every year, we witness about half a million deaths, a number that remains fairly constant unless there’s a pandemic. Death, as inevitable as it is, remains a challenging concept for us to confront. Unfortunately, it’s not something we contemplate enough.

“The deaths I investigate are the ones that could have been avoided—tragic instances involving young teenagers, children, and even the elderly, particularly with preventable falls, a significant issue among the elderly population. For any generous philanthropists reading, this presents a remarkably cost-effective means to prevent unnecessary harm and loss of life.

“As you mentioned, there’s more to address regarding the reporting issue, especially in terms of collecting comprehensive data. Regrettably, these reports only cover around 0.1% of all deaths, with just a small percentage related to inquest data. On average, only about 450 of these reports get published annually. The few hundred deaths I review and analyse are merely the visible part of a much larger problem.”

I pushed a little bit more on whether Georgia thought there was a reporting iceberg in the wider healthcare ecosystem. I asked her if the reporting iceberg extended to the reporting of preventable deaths.

“Yes, certainly. When it comes to deaths, it’s probably the simplest thing to document. There’s no ambiguity around a death—either someone has passed away or not. It’s a clear-cut yes or no. In contrast, errors in medication might hold more complexities. However, if we struggle with accurately recording deaths, how can we expect to manage medication errors effectively? That’s precisely why I’m starting with analysing death data. While I’ve examined various types of harm data, if we can’t accurately document deaths, it’s unlikely we’ll handle other aspects correctly.

“I’m beginning from the top of the iceberg and working my way down. The realm of safety and harm suffers from severely inadequate data that urgently requires improvement. Without this enhancement, organisations will continue evading responsibility, neglecting to address these deaths. If we can’t prevent fatalities, how can we possibly prevent medication errors?”

Georgia and her colleagues have worked tirelessly in recent months and years to highlight the importance of evidence-based medicine, the risks associated with opioid use and more recently the importance of learning from coroner prevention of future deaths reports. Much of this work is unfunded so to finish I asked her what keeps her going.

“Nothing stops me from continuing to do this work. I try to follow the evidence. And I think what we do well is we continue to use evidence, there’s always evidence. So, we keep continuing to use that evidence to inform decisions and we continue to shine a light on these issues, regardless of what politics or personal vendettas or what personal spotlights they tried to use to detract from the use of evidence in making decisions.”

References and further reading

  1. Preventable deaths tracker: https://preventabledeathstracker.net/
  2. Preventable Deaths substack newsletter: https://preventabledeaths.substack.com/
  3. Preventable deaths involving opioids in England and Wales, 2013–2022: a systematic case series of coroners’ reportshttps://doi.org/10.1093/pubmed/fdad147
  4. Preventable Deaths Involving Medicines: A Systematic Case Series of Coroners’ Reports 2013–22: https://doi.org/10.1007/s40264-023-01274-8
  5. Deaths from Medicines: A Systematic Analysis of Coroners’ Reports to Prevent Future Deaths: https://doi.org/10.1007/s40264-017-0588-0
  6. Recognition of Coroners’ Concerns to Prevent Future Deaths from Medicines: A Systematic Review: https://doi.org/10.1007/s40290-023-00486-8
  7. Pandemics, Pharmacology, and Preventable Deaths: https://www.bps.ac.uk/publishing/pharmacology-matters/august-2022/pandemics,-pharmacology,-and-preventable-deaths
  8. Preventable deaths from SARS-CoV-2 in England and Wales: a systematic case series of coroners’ reports during the COVID-19 pandemic: http://dx.doi.org/10.1136/bmjebm-2021-111834
  9. Deaths attributed to the use of medications purchased online: http://dx.doi.org/10.1136/bmjebm-2021-111759