DNR

Hello? What's not to understand!?  How much clearer do I have to be while unconscious? To a hammer everything looks like a nail; to an ER physician every body cries for intubation and CPR. Almost every time, the person in scrubs wins the dispute. The story, presented as case notes in the NEJM, and picked up by George Dvorsky at Gizmodo and then liked by Neatorama, is that an old chap presented at a Florida ER department a) unresponsive and b) with a signed DNR tatooed on his chest. The ER team intervened aNNyway, because that's what doctors do: decisions, especially those which result in direct action, become [as in are fitting to, but also as in create] a successful medico. But they also had the humility to send a note to the hospital ethics committee. The ethics committee decided that the tattoo was a clearly expressed wish and that it was silly - and wrong - to search for the next-of-kin especially as the old chap presented with no ID.  When my friend and mentor Lynn Margulis had a stroke, her daughter had to fight to get the medical team to heed her mother's clearly expressed terminal care wishes. NEJM

I've been to end of life issues before, and before that, and written a living will; but I haven't gotten the dnr tat yet. They're very expensive, tattoos, maybe I should get a permanent marker and draw a DIY DNR. That way, if I get "tattoo regret" - yes it's a thing - then I just have to scrub regularly or wait to exfoliate. The current advice is don't call the ambulance when you or your aged loved one has their last crisis. If you do, the professionals will do what they do intervening to save lives, even if if means breaking ribs during CPR or stuffing tubes in every orifice and making new holes to take yet more tubes. It is a living for the paramedics, nurses and doctors but it can be ghastly for the Principal on the gurney and eye-wateringly wincing for the attended loved ones. The trouble is knowing which is the last crisis, because most of us would like to see Mum back in her own home patched up for another while.  The last death - at home, in bed, a blessing - I was involved in, the family had to push back quite hard to prevent the corpse being taken to hospital to be pronounced dead. Most deaths occur in hospital and outsiders (GPs) are getting out of the habit of writing death certificates. You can't get the locus or the Care Doc to sign off, it must be the deceased own doctor. Shucks, nobody says that death is easy but it's going to happen for sure; so let's not make it more difficult than it needs to be.

De mortuis

. . . nil nisi bonum. I'm not about to slag off one of the administrators who died at his post at The Institute yesterday morning; although we had unfinished business. Word has it that he stood up from his desk, sat heavily back down and died - he was 62. We inhabit a society that finds such abrupt departures unacceptable, so several people who share his office did their best to help him and one of them called the Nurse and an ambulance. We have a Nurse on site during the working day because our community is nearly 10,000 strong and some of them feel not-so-strong periodically. When one of my students slopped concentrated sulphuric acid onto the bed of the fume hood in 2013, and another student rested her fore-arm in the puddle <ouchy!>, it was to the Nurse I sent the injured party with a pal for support if needed.

Yesterday, when the nurse arrived at the double, she started on the SOP [standard operating procedure] for such cases including cardio pulmonary resuscitation CPR. I've done that, or at least the ventilation part of it, with no prior training, back 40+ years ago when I worked as a hospital orderly. It didn't work out in 1978, despite the best resources [well maybe untrained self excluded from 'best resources' in that case] and it happening in a hospital ward. While the Nurse tried manually to force some sort of circulation to the brain, two ambulances arrived, and the paramedics took over. I happened to leave the building at the end of the day with one of the technicians who'd been much closer to the centre than me. I said "Well at least he went quick". He replied "Not really, they went at him, CPR, defibrillator, the works, for an hour. They have to do that . . . until someone tells them to stop". An hour is a long, long time anoxic to retain any sort of quality life if they did get his heart going again. Let's ask some questions:

• Who is it who finally calls it futile and  . . . tells them to stop? 
• Why is that the policy? 
• Is that Institute policy; paramedic policy; Nurse policy?
• Who benefits?
• Is there any sense of informed consent about these procedures from The Principal ?

I think I've made my DNR or even my NFR instructions clear to my family. It's quite okay if they hold my hand [it might be reassuring] or just wring theirs without feeling obliged to Do Something. I have no intention of dying at work, but I will now have a word with my most immediate work-mates to call my family but not call an ambulance. I really cannot abide fuss.

Going going gone

In the week after Christmas a parcel, not Amazon but plainly a book, arrived in the post. Dau.I sniffed and said [I paraphrase] "It's probably another book on dying from yer wan" . . . and she was correct: yer wan being a colleague who is well connected with the medical profession who, like me, has lost her father. We are both interested in end-of-life issues, but not to the exclusion of all else. We don't, for example, listen to the death notices three times a day on Irish local radio. The fact that such an institution exists suggests that Ireland is much more engaged with death than, say, England where I grew up without seeing a dead body. I didn't even see the first dead body I hefted while working as a 17 y.o temporary hospital porter - it was all wrapped up in a sheet.

The book the way we die now [harrrumph, another book title without capital letters] was written by Seamus O'Mahony, a consultant surgeon specialising in alcoholic liver disease, now working in Cork. He spent 15 years working for the NHS in Britain, and the book draws on his experience in both countries. I've written about hospital death before - Atul Gawande's Mortality for the US experience; Henry Marsh's Do No Harm: Stories of Life, Death and Brain Surgery. I have filled in an advanced health-care directive AHD ticking all the don't intervene boxes, although I haven't yet gone so far as to have No CPR tattooed on my chest. O'Mahony is skeptical about AHDs: "no surgical intervention" precludes a quick nip and tuck to prevent copious bleeding in the stomach which can be fatal; resolving the bleed is most unlikely to leave you in a persistent vegetative state or with broken ribs [as in CPR]. The problem with such documents is that they are largely driven by anecdotal reasoning: such a thing was visited upon my Aunt Gwendolyn, I don't want that to happen to me; which is then summarised in a short generic phrase on the ADH. The phrase sounds firm and clear but rides rough-shod over the wobbly old nuance of real life. It's never exactly the same situation. In particular, it is very different when you are the principal actor: whatever your level of empathy or intimacy, it is easier to switch someone else off than yourself.

the way we die now is not particularly long but it is discursive and doesn't give any hard answers or advice. Which is a pretty good metaphor for our engagement with death. As I say above every death is different and, if you believe every life is sacred, each end-of-life will have particular circumstances that don't always, or ever, fit neatly into a piece of legislation or a standard operating procedure SOP. Most deaths in Ireland, the US, the UK and much of the Western World happen in hospital and all civilised countries have rules are regs about terminating other people's lives. O'Mahony has a locus standi on the issue because he's been there many many times. It goes with the territory if you choose to work in an acute hospital.  Inevitably his experience has coloured his practice and opinions; we know this because the book is filled with anonymised Endings to illustrate particular points. One of his key issues is 'informed consent' which we are now required to get from participants in medical trials [for, say, drug development] or medical interventions [surgery, chemotherapy, medications]. The doctor has to explain, in words the punter or the next-of-kin can understand, what are the potential down-sides of such a treatment, what are the benefits and what is the risk [likelihood x magnitude of gain/loss]. As most of these punters will have bought a Lotto ticket in the last month, they are clearly not equipped to do the math. This will not stop them having forthright opinions about what the doctor should do and that is usually to throw the book [MIMS] at their ailing relative; and insert tubes in all orifices to keep the Principal alive, preferably forever.

There is little room for palliative care in such a dynamic and there is, increasingly, the threat of the law. This is last thing the medical profession wants because it will impinge on their judgment and autonomy. We-the-patient, however, would like to have a bit of legislation because we remember the medical gaffes [eg symphysiotomy] for a long time. The law is a blunt instrument which is only peripherally related to justice or common sense. O'Mahony devotes time to the case of Janet Tracey who broke her neck after being diagnosed with terminal cancer. The hospital applied a DNR without her consent and lost their case in the British Courts. Similar cases now force medical staff to try anything and everything regardless of cost [not only financial cost] if 'the family' require it. It seems a bit odd to me: the desires of a particular group of next-of-kin with their own peculiar internal dynamics are now allowed to force an additional burden on me the tax-payer [an on the poor continuing to suffer patient]. All that money and time spent on 'hopeless' cases in acute wards or ICU could be spent on a new anti-smoking campaign, or a fitness regime for fat children . . . or the homeless or refugees if that's what engages you this Winter.

O'Mahony, in his chapter A Passion for Control, also has little patience with Marie Fleming who forced the state to engage with her through the court system up to an including the Supreme Court. She sought the Right to Die in a way that suited her rather than being forced to exit when her multiple sclerosis closed down her systems. The media, including The Blob, was generally approving of her bravery in taking a case that would clear the decks for others with terminal disease to exit in their own homes rather going on a final foreign holiday to the Dignitas clinic in Switzerland. O'Mahony investigates the particulars of Marie Fleming and concludes that she had control issues. Whatever the cost of a couple of weeks of medical intervention at the end of life, the costs of multiple increasingly expensive court appearance is astronomical [the state picked up the tab]. Senior Counsel feel they are even more entitled to money than medical consultants; and they don't need to put some aside for medical negligence insurance premiums.

Finally there is a whiff of trolleology about the arguments for medical intervention. Trolley ethics experiments show that most normal people would happily throw a switch to kill one person and save five lives but would be less willing to heave a fat chap over a bridge balustrade to achieve the same 5 vs 1 result. Medical ethics seems to be fine with allowing a patient to dribble out their existence with inattention but vehemently against cranking up the morphine on the syringe driver to clear the bed. I reckon the latter is kinder: we thought that when we terminated our beloved dog, but we are not allowed to think it about our mothers.

One final thought: there are 7.5 billion people on the planet. Some would argue that is about 5.5 billion too many. When there were far fewer people life was cheap, now paradoxically, it is super expensive.

Davy Jones

I spend quite a bit of time mulling over End of Life Issues intubation - nursing homes - DNR - funerals - disposal of remains. I hope not too dismally.  In any case, I was much taken with a link on TYWKIWIDBI about drilling 5cm air-holes in coffins . . . so that they sink smartly and don't go all Bob the Casket and drift ashore.

Cue Master & Commander soundtrack.  The EPA in the US has some restrictions on the practice but basically asserts that everyone has the right to be buried at sea - not just Pat the Salt. So long as

• the launch is 3 nautical miles = 3,000 fathoms = 5.5 km from the low-tide mark
• no wreaths esp. plastic wreaths
• no tombstones, mausoleums
• casket to be weighted (no lead!!) and bound with six (6) bands of stainless steel, chain or natural fibre rope, holes drilled in the top and both ends [see pic R]
• The event is reported to the local office of the EPA within 30 days.

I can't imagine what the EPA is going to do with the information on the Burial at Sea form, except file it. You may be sure I was hopping from one foot to the other until I could find out what the score in in Irish territorial waters because burial at sea sounds like a cheap and cheerful option . . . unless a force 6 gale blows up as the mourners leave harbour. It turns out that there are no regulations (yet) about the practice - only guidelines.  A couple of years ago a woman was sea-buried but reappeared on the beach many months later and caused work for the Gardai and the state pathologist - who found this body has been post-mortemed before. Nobody wants that sort of hassle so let's all resolve to do it properly. As far as possible by following The Guidelines:

• 50 miles off the coast!
• No embalming and no MDF cheapo coffins
• no oak mahogany or iroku either - they last too long
• holes drilled prior
• robust for launch impact >!kersploosh!< and indeed impact >!baDONG!< on sea-bed several minutes later
• 100 kg extra weight - steel chain recommended
• No lead Pb, copper Cu or Zinc Zn

The 50 mile exclusion zone indicates a weekend trip at least - bring plenty of rum and ship's biscuit.

Bipap better

For the moment I am coat-tailing a free-to-me 2for1 subscription to the New York Times.  The NYT can get a bit shouty and exasperated with their President but dooeshave good coverage on other matter. With my end of life issues hat on, I was interested in an analysis of the outcomes among 35,000 older people after they were intubated. The answer is, in general, Not Good. Intubation is when the medics thrust a tube down your trachea and attach the other end to a ventilator. It is uncomfortable and/or painful and if you're no all there in your head, you'll be tempted to pull out the obstruction, so you're tranquillised. Even if untranqued, you can't talk with a tube down your windpipe, so you will have missed the time to say goodbye.

The keynote study was published in the Journal of the American Geriatrics Society by a team led by the delightfully named Dr Kei Ouchi. Here's the survivorship data:

Age Group	% mortality
Overall	33%
65-74	29%
75-79	34%
80-84	40%
85-89	43%
90+	50%

It is clear that, for surviving the intrusion, younger is better. The difference between 85 and 95 is that at 85 you can cut your own grass while at 95 you can't wipe your own ass. But only 24% of those intubated are discharged home. Those not going home or dead are discharged to a less acute health-care facility. Dr Ouchi is an emergency room physician who found he was better at intubating than talking to the intubatee about whether s/he wanted the intervention. And all too often he'd see patients he had intubated occupying a bed elsewhere in the hospital in a worse state than before he'd treated them. Hence the data-gathering exercise, to see whether, and for whom, intubation was likely to work.

There is a move towards the less invasive bipap bi-level positive airway pressure ventilation system. This delivers the air by a tight-fitting face-mask which if probably uncomfortable enough but doesn't require sedation to tolerate. You can also remove it to kiss your wife, have a slug of water or utter a wry comment to keep up the bedside morale . . . you want something waggish for your last words if you don't make it. The other advantage of bipap is that it wins a bit of time to discuss the prognosis and get closer to informed consent with the rellies. Intubation is not something that you can easily stop and start.  Informed consent requires that the physician and patient's "surrogate decision makers" = rellies are on the same page for communications. Too often, it's like they are talking in separate rooms [JAMAnetwork data and analysis]. The NYT article wraps up with the advice that it's better to have the conversation about advanced health care directives now rather when you wash-up in A&E in a crisis. I concur: DNR, please if any of my surrogates are reading. There will be more for you to inherit if you don't waste it on futile and painful attempts to delay the inevitable

Chicken Little goes EU

One of the absolute benefits of being in the EU is that the apparatchiks of Brussels force us to Do The Right Thing. Although successive Irish governments have been not doing the right thing on, say, water quality because it costs more than they believe Joe and Josie Poblacht will countenance. But an expert consultation or a Tribunal? That is something governments can get behind because a) the costs are finite, rather than an indefinite commitment b) there is patronage and nepotism prospects in filling the expert panel.

One of the EU requirements is that each member state is required to engage in future proofing by publishing a national risk assessment NRA every three years. This can be performative box-ticking, as when my binfo project students were obliged to cogitate on whether eye-strain or back-pain was more likely for screen-staring desk-johnnies. That's silly, but unless someone thinks about disasters, we're gonna be wrong-footed and under-prepared when something adverse occurs. On Sunday 19th May 33mm of rain fell on Cappoquin, Co Waterford causing flash flooding: that was a mess and the clean-up costly, but is it likely to happen again in our lifetimes? If so, "we" should do something about it; if not then not.

RTE reported on the 2023 National Risk Assessment NRA carried out by the Government Task Force GTF on Emergency Planning [full PDF] - go TLAs. Essentially the GTF was tasked to think what could possibly co wrong?. A bit like the DNR end of life issues which were codified by the Irish Council for Bioethics 20 years ago. Any risk assessment, National, or otherwise, usually tries to calculate relative risk as the product of an event's impact multiplied by its likelihood; usually on a 1-5 scale for each parameter. I've clipped [R] their assessment of Tech Risks: H Cyber Attack is rated more worrisome than I Undersea Infrastucture, J Gas/Elect outage or K Oil Supply. I guess we weathered the loss of Russian oil 2 years ago? 

impact is  assessed w.r.t. 

• people [1 = less than 20 deaths to 5 = more than 250 deaths; with injuries in proportion]
• environment [1 = local simple to 5 =  heavy widespread long-lasting]
  
• economy [1 = <1% of annual budget i.e. less that €1bn up to  5 = >8% of the budget]
• essential services [ 5 = Failure of services essential for society to work]
  
• society [5 = Community unable to function without significant support]

likelihood is scored: 1 = 100 years between occurrences . . . 5 = happens at least once a year

For the GTF some things were No Worries on a national plan level: Volcanoes Fog RTA Rail-Crash Radiation Civil-Disorder Disinformation Drought Heatwaves Wildfires Hazmat-Accident Structural-Collapse. These events may be Cappoquin serious but are "most appropriately managed at departmental, agency or regional level".

As far as poss, the NRA was evidence driven which is different from headline driven.  Eee but the press do love a car crash and a gangland shooting. These events almost always make the [tut tut watch me be shocked] news and the rest of us have been trained like Pavlov's dogs to respond in like vein. Irish train crash takes precedence over any Indian train crash; unless (bridge-failure + precipice + dozens of dead) applies. Or I guess (train + bomb + dozens of dead) gets the RTE editorial juices going.

Nevertheless, the GTF did canvass public perception and cross-reference this to The Evidence. Which gave them an opportunity to use a coxcomb plot [bloboprev]:

Note that the scale is 0 (well 1 really) to 25: the latter scoring 5 for likelihood x 5 for impact. Mr & Mrs Poblacht are probably over-anxious about water supply and trawlers dredging up the internet but think plane crashes happen elsewhere and rarely. But it just needs one Kegworth on Irish soil and that will change public perception in line with reality.

The GTF identified "Emerging Risks" which they reckoned would make the cut when their successors were required to carry out another NRA in 3, 6, 9 years time: AI; AntiVaxx; Biodiversity loss; Climate change; Drones; Heatwaves; Invasive species; Lithium fires; Super-HGVs [bridge, precipice, I guess?]. The Public were also asked to submit their list of Future Horrors but that generated only 310 responses [clearly the GTF didn't work tooo hard to get the word out, because I would defo have sent in a list of cranky anxieties]. You can track down the 310 list at p.43 of the GTF NRA PDF.