Wednesday 18 January 2017

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, howver, 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.

1 comment:

  1. Bob, I would love to be in touch with you - your sister Katie put me on to your DNR tattoo blog in the first place, after she had been to a talk I gave about creating a good end of life in Stroud. How can I connect with you? My website is