Doing death right

When my father died in an English hospital in 2001, my brother and I went into the morgue to identify the body . . . because there was an outside chance that the hospital management had got the wrong family linked to the definitely dead corpse in the basement. The Old Man fell backwards down half the flight of stairs on a Sunday night, fracturing a couple of vertebrae, and was blue-lighted to the nearest hospital. Two days later a physiotherapist with a capacious bosom and determined manner attempted to lever him out of bed to do some exercises. The Physio had the right surname but the wrong bed in the wrong ward. She was eventually persuaded to cease-and-desist but never apologised for the additional unnecessary pain the old boy endured under her hands. Every day, sometime twice a day, my mother went in to visit and hear another chapter in a farago of errors, mismanagement, carelessness and disrespect. So it seemed entirely within the bounds of possibility that the other chap (who needed the physiotherapy) was actually dead in the basement while my father was awaiting yer man's CAT scan in Crewkerne, the other hospital in the same NHS Trust.

My brother, who was then flush with money and righteous with resentment, sat my mother down and took notes of the events and time-lines of our father's descent from life to death over 5 days of being ragged around. He sent that summary off to a QC / Senior Counsel with a cheque asking for a full investigation. After several weeks the QC came back to report that my father's medical records had been "lost", so it was hard to get more information than he'd already received from the family. There was a suggestion - and I know this sounds incredible - that he'd been given an insulin injection, went into a coma and died while the care-shift was changing over at the nurses station [he was Type II (late onset, nothing to do with lack of insulin) diabetic]. QC asked did The Brother want to s[p]end another cheque for £10,500 [that's 10,000 guineas because lawyers are old fashioned and like the extra 5%] to take this further? The white heat of indignation had dissipated by then and the answer as No. We all knew that no investigation, no letter of complaint, would bring the Old Man back; but a broadside from a well connected, literate and articulate family might prevent another fellow - poorer, frailer, lonelier - from being subjected to a similar shop of horrors.

Then again, that wasn't the worst death you could imagine. Less than a week from being upright, autonomous, interested and engaged to being flat out and unresponsive on a slab looking curiously like a Roman patrician from the toga-like shift he was rigged up with by the mortuary staff. Angry at the accident and the indignities but not demented; not tooo leaky, managing the pain with stoicism and dignity: gone!

This all re-surfaced for me on Tuesday because I was invited to observe an End-of-Life, How-to seminar in St Luke's Hospital, Kilkenny. This was led by the widow of my late lamented pal Barry who died in that hospital, surrounded by his loving family, from idiopathic pulmonary fibrosis IPF 3.5 years ago.

The saga of his final, drawn-out encounter with the Irish medical machine was a curates egg - good in parts. It reads like that the lower down the medical pecking order an employee of the HSE was the better s/he was at communicating clearly, doing the messy difficult bits cheerfully, and finding time to listen to the patient and his family. The consultant was brusque, secretive, uncommunicative, and certain a) of the diagnosis and b) of the solution. The nurses were uniformly brilliant; two junior doctors and two anaesthetists were able to listen to all the family questions and give information that was useful but neutral - so that Barry could make an informed decision about the medical options.

To the fury of the Consultant, Barry refused intubation and further intervention, requested palliative care only and died a few days later. His family put their heads together to recall and sort out the tangled chain of events and interventions. His widow wrote it all down in a long, articulate, even-handed letter to the hospital's Clinical Director. That man, with remarkable competence and compassion asked her to come visit him to better explain what had gone so wrong on his watch. He also asked if the bereaved would tell her story to that year's crop of medical interns (one year from being full-qualified, autonomous House Officers). Because of my long-standing interest in end of life issues, and because of my mother's recent, not wholly satisfactory, brush with near-death in hospital, I was invited to be a fly on the wall to the third version of what has become an annual fixture at that hospital under than clinical director.

After hearing Barry's tale in some detail, the ClinDir tried to wrap it all up as a short series of life lessons, which he hoped the eight interns would take on board both on his watch and in their later careers in medicine. First it is fair to note that, for every letter of criticism and complain, the hospital receives 7 letters of thanks and commendation.  It's nice to see that people are still prepared to do The Positive.

• Listen to the patient! Sir Wm Osler, Canadian medical practitioner and philosopher said: "Listen to your patient, they will tell what is the diagnosis".
• Be respectful
• of the patient and the family - it's a lot harder for them than it is for you
• of your medical colleagues - you should continue to listen to alternative explanations from other people even after achieving the dizzying heights of Consultant. 
• It's important to appreciate and recognise that everyone on the medical team has an essential role and their contributions have to be woven into a complementary skein for the best patient outcomes. Disrespecting The Help will make them clam up and not give their best.
• Make time to talk - and listen - to the patient and family
• It's okay if some of the patients die: everyone does that in any case
• Beware of futility and futile medical interventions
• They dishonestly raise hopes and expectations
• They diminsih autonomy
• Most interventions (devices and pharmaceuticals) have side effects. Does the patient want to lose sphincter control or get splitting head-aches or go out with cracked ribs from a desperate CPR?
• The cost a lot of money [to the state, the insurer, the family] for minimal benefit (these are, after all, futile interventions that will not significantly increase the length or quality of life)
• There are opportunity costs too. With only 4 intubation kits available, you really want to think twice before block-booking one for an old chap with fritzed lungs: young mother in emergency admission will be deprived of that potential life-saving tool.

You really need to sort out your advanced health care directives today; lest you find yourself in or beside a hospital bed tomorrow. If you get to the crisis point of a hospital admission you are entitled to be told:

• what's wrong with at least a differential diagnosis [it could be this, but it's more likely that] preferably with numbers
• what is going to happen now or in the immediate future [so that the catheter, or the surgical gurney, doesn't come as a total surprise].
• what is the likely outcome / prognosis

On a related matter, What'sYour Grief has appeared above my notice-horizon. It has a lot of ideas, themes and resources fro coping with loss. I can't relate to much of at all at all; but that's possibly because of my blunted affect or currently ungrieving state.