An Iatrogenic Death: On forgiveness

Because I’m a Christian and Christians are supposed to forgive I wrestled for a long time with the idea of forgiving the surgeon. At first I decided that since it wasn’t my life the surgeon had taken it wasn’t my place to forgive him. Then, in between everything else that was happening in my life, I began to contemplate how much I’d lost in losing my father and realised I was holding that loss against the surgeon and did have to decide if I should, or could, forgive him.

It was easy to let go of the idea of pursuing him somehow in an attempt to punish him. It wasn’t feasible and it would only hurt me too, as well as the rest of the family. Eventually, by thinking hard and trying to put myself in his shoes, I came to understand how he might have decided to take the easy route (because he could) and bury his mistake and how, in the same place, I might have been tempted to do the same. But after a while I realised that such letting go and understanding aren’t forgiveness. And then, in the business of life, I put the matter aside. We live a long way away from the scene of the “crime” so since I was never likely to bump into the surgeon on the street or the local shopping centre deciding on forgiving him was not at the forefront of my mind.

However, recently I read Michael Snow’s “Love, Prayer, and Forgiveness: When Basics Become Heresies” (see a review here). Snow’s views on forgiveness line up with those found here where it says, “The Bible says that we are to forgive as God forgave us (Ephesians 4:32, Colossians 3:13). God forgives us when we repent (Mark 1:15, Luke 13:3,5, Acts 3:19)“. So when the surgeon expresses regret and asks for forgiveness I will forgive him. I suppose if he’s not already dead or demented that might happen one day. Or not.

An Iatrogenic Death: Part 11

The expert reviewer’s report was a major disappointment to me. It was a fudge; an exercise in wagon-circling and obfuscation. Instead of providing reasons why what was done was right, he found reasons to say it was not wrong but, when looked at closely, these reasons could not bear the explanatory weight he placed on them.

For instance, in response to my complaint that, all things considered, the choice of local excision (rather than pancreaticoduodenectomy) was not in my father’s best interests he discussed the issues I’d raised (tumour size, malignant potential, fitness for surgery etc.) but failed to address them with reference specifically to my father’s case. It was as though the surgeon could have taken almost any treatment option and the expert reviewer could say that it was “not wrong” to have done so because some doctor somewhere had done the same at some other time to some other patient whose circumstances were similar to my father’s only in that they had a tumour in a similar spot. But this was the clincher; while saying that he would have recommended, “the more major operation of pancreaticoduodenectomy, because of the uncertainty of being able to totally remove the tumour via local resection,” he argued that it was “not wrong” to have performed local excision because he assumed, on the basis of no evidence and despite my evidence to the contrary, that Dad had “full knowledge” of what he was signing up to when he agreed to let the surgeon remove his tumour.

My evidence that Dad had nothing like “full knowledge” could be dismissed because one rule of the game was that the reviewer was to pay attention only to the contemporaneous records. It appears to have been a non-binding rule when it came to evidence from those in an employment relationship with the hospital. In the matter of the missing post-operative observations, he was willing to accept evidence that was not part of the contemporaneous records. Indeed, the nurse involved being overseas and unavailable, he was willing to accept evidence about what he or she had done from the Director of Nursing, a person who had neither witnessed nor taken part in any aspect of Dad’s care. That device allowed him somehow to conclude that, “nursing and medical staff responded appropriately to the symptoms and signs recorded during the 48 hours following the first operation,” despite their multiple failures during that period.

And so it goes, depressingly, on and on. Here are a few more examples. He remarked that pancreatic necrotic material will not flow out of any size tube and that the major reason laparotomy is done in this condition is to physically remove the necrotic material. But he made no criticism of the fact that after day 16 no attempt was made, via laparotomy, to physically remove it. He wrote that he would support the view that the duodenal ulcer may have resulted from the nasogastric tube but also wrote that it, “equally as well may have been due to the ongoing stresses of the abdominal condition,” and, in any case, the cause was not an issue. But if one is going to make a life or death decision on the basis of what is causing an ulcer then the cause is not just an issue. It’s the issue. Finally, he even insinuated that we had been told of the decision to end treatment and had agreed to it. He did this by quoting from notes written on the day of the final conference and the following day.

(Day 49) “family discussed patients (sic) condition with [the surgeon] – aware of poor prognosis.”
(Day 49 @ 2200) “Family is to visit. Distressed at news but coming to terms with poor prognosis.”
(Day 50) “Discussed situation with [the surgeon] – decided to cease active treatment.”
(Day 50 @ 2200) “Continues to deteriorate….. Relatives aware and visiting soon.”

At a meeting where the reviewer’s report was being discussed with me, complaints unit staff refused to accept that the second note quoted above referred not to a discussion with the family but to a discussion among the doctors and refused to accept that other notes referring to the family being aware of Dad’s poor prognosis did not mean that the family was also aware of, or gave consent to, the decision to cease treatment. Not until I provided statutory declarations from my sister, my aunt and my brother, all confirming my account, did the complaints unit staff accept that I was telling the truth and that nobody in the family knew about or had agreed to this decision. That led to the promise of one good outcome; a memorandum, they said, would be circularised to all hospitals advising that it is unacceptable for medical staff to make these life and death decisions without involving the family. I have no idea if that was ever done.

The expert reviewer’s failure to explicitly criticise any aspect of my father’s care meant that the complaints unit file would be closed and no action would be taken by the unit against the surgeon or anyone else involved in my father’s treatment and death. If we wanted to pursue the matter any further we would have to launch a civil action in the courts. In Australia then, and I believe now, you can only claim for financial losses such as funeral costs and the like. But going to court wouldn’t bring Dad back and after what we’d already been through none of us had the heart for that. I certainly didn’t. By then I was in something of a state of shock, or of professional cognitive dissonance. Suddenly the rules of professional conduct which had been drummed into me for years were shown to be unimportant to professional and bureaucratic authorities in certain circumstances. It’s a terrible thing to realise that there is no justice, that a thing worth doing is not necessarily worth doing well, that cheats do prosper and that who you know is often more important than what you know.

I decided to put this story into the public space (after my mother’s death so that she could not be hurt by it any more) because I had the privilege of an education that allowed me to recognise a wrong even if there was nothing I could do about it. Yes, what happened to my father happened a long time ago but similar things still happen.

Consider the story of Ben Witham that I saw recently on the TV program Outback Coroner. Ben was a 17 year old with acute lymphoblastic leukaemia, who died after developing peritonitis from a stomach perforation/laceration that might have occurred during “removal of the gastro tube”.

Whatever the cause of the perforation, Ben began experiencing abdominal pain and diarrhoea. Several hours later, when the pain had become very severe, he was seen by a doctor who examined him and wrote that he had, “generalised tenderness, guarding, rebound tenderness, tenderness with auscultation,” and notified the admitting doctor, an oncologist. This fellow turned up from a party of some sort an hour and a half later, did not perform a physical examination and put Ben’s abdominal pain down to the diarrhoea. Surgery was not performed until Ben had been in great pain for 15-17 hours. He died 10 days later. The pathologist who performed the autopsy described the perforation as an, “overwhelming insult from which Ben did not recover,” and that, “contributed to his death”. See the coroner’s findings here.

Now the phrase “rebound tenderness” is a red flag. It says “peritonitis” until proved otherwise. It’s like “chest pain” says “heart attack” until proved otherwise. When I was a junior doctor working in Casualty (now Accident and Emergency) even young, fit-looking men would get a complete cardiac workup if they came in complaining of chest pain because you do not want to miss a heart attack. Yet this specialist oncologist was prepared not only to ignore the red flag, “rebound tenderness,” but not even to check for himself whether it was present.

At least the coroner found that, “Ben was wrongly diagnosed and did not receive the further investigations or surgical review that his symptoms demanded,” and the oncologist experienced a moment of public shaming. But the coroner also found that, “[t]he missed diagnosis and subsequent failure in care does not appear to have arisen from any systemic failing”. The oncologist just made a wrong diagnosis. Yeah. But he made a wrong diagnosis because he failed to do what doctors are supposed to do in order to make a diagnosis. Faced with a young man in severe pain with an “acute abdomen”, where peritonitis has to be excluded, he failed to perform a physical examination, he failed to order any investigations and he failed to ask for an urgent surgical consult. If I’d done such a sloppy job as a student during a clinical exam I would have been failed yet, as far as I can tell from googling, this fellow appears to have suffered nothing more than that bit of public shaming. Certainly there are no conditions on his registration apart from the standard one for a specialist, i.e., that he must work within his specialty. Perhaps the systemic failing is that there is no mechanism, “pour encourager les autres,” who have Visiting Medical Officer admitting rights in hospitals, to ensure that they don’t cut diagnostic corners but adhere to proper medical practice. I doubt that attempts to prevent such failings would be successful but when such failings come to light they should surely be punished, and hard.

An Iatrogenic Death: Part 10

Dad’s death certificate arrived. It stated that he died of septicaemia of 2 days’ duration, due to peritonitis and pancreatic abscess of 8 weeks’ duration, due to cholecystitis of 8 weeks’ duration.

That was a bit hard to take. Septicaemia? For 2 days? The most recent bout had started with rigors 6 days before his death and he’d been started on appropriate antibiotics. Even though they’d been stopped the day before, given his poor renal clearance, he might still have had appreciable levels in his blood at the time of his death. And anyway, where was mention of the haemorrhage? Starting with a haemoglobin level of 6.9 (N 13-18), he had lost at least 2 1/2 litres of blood – something like half his circulating volume – over the 3 days prior to his death, and his bowel was found to be full of blood at autopsy yet that was not considered to have been a cause of death?

Cholecystitis? He had some mild, chronic inflammation of his gall bladder but it didn’t rupture because of that and cause his peritonitis. Bile was leaking into his peritoneal space because of a pin hole that somehow had been put in his gall bladder.

Pancreatic abscess? That was the first time I’d seen that written down. And I’d never heard anyone at the hospital say it out loud. They had said over and over that they didn’t know what was the source of Dad’s sepsis, they didn’t know why his fevers could not be brought under control and that Dad was not “reacting normally”. Yet here was one of the doctors involved in Dad’s care putting a name to the problem, a name that any junior doctor would have put forward as being most likely, given the history. I had certainly thought it the most likely. All the signs were pointing that way but they had been ignored for more than a month.

Then came the autopsy report. The pathologist found, “peri-pancreatic and pancreatic abscess connecting to the sinus opening onto the abdominal wall. … Pancreatic necrosis. [Pancreatic] pseudocyst containing abscess material. Fibrinous (not suppurative) peritonitis with multiple adhesions. … Left ventricular failure, right ventricular failure and pulmonary oedema. Enlarged dilated heart – about 460g (N about 320g) with a small vegetation on the mitral valve. Liver enlarged, very jaundiced (probably exhausted from hypotension and sepsis via the portal vein). Some obstruction to common bile duct but not complete. Melaena in bowel. Stress ulcer – gastric or duodenal – hard to identify due to autolysis.”

Most of the rest of the story of how I researched what had happened can be found in the post on researching my father’s death. One thing I didn’t mention there was that when I went into the hospital to look at the notes and decide what I wanted copied I found the report written by the doctor who did the endoscopy after Dad had the first bleed from his bowel and found the “stress” ulcer referred to in the autopsy report – the one that was supposed to be due either to multiple organ system failure (according to the ICU doctor) or to infection eroding a vessel (according to the surgeon). He said Dad’s stomach was normal but the tip of the naso-gastric (which was supposed to be in the stomach) was in fact lying in the duodenal cap. Right by the tip of the tube was a solitary ulcer that had blood clot in its base. His opinion was that the ulcer was traumatic in origin and was caused by the tip of the tube repeatedly rubbing against the duodenal mucosa.

Traumatic duodenal ulceration is not the same thing as ulceration due to multiple organ system failure (MOSF) or as tissue erosion due to infection. It is not an untreatable pre-terminal event (due to poor tissue oxygenation in MOSF leading to widespread break down of gastric and duodenal mucosa and multiple bleeding points) and it need not require major surgery to treat successfully. Why was the gastroscopist’s opinion withheld from us at the last conference? I can only assume the doctors didn’t want to give us any reason for hope. They wanted us to believe there was no hope so that we would give up hope and give them permission to do what they wanted to do, i.e., stop the pretence that they were providing treatment aimed at cure and, instead, stop all treatment that was keeping Dad alive. Perhaps it would have eased their consciences to know they had that permission. Or perhaps they might have felt safer from legal consequences if they’d had it. But not having it made no difference. They did as they pleased.

By a couple of months after Dad’s death I had learned enough to decide that lodging a complaint was warranted. It was written and lodged within another couple of months and then, after a considerable time of messing about because of changes of staff at the unit, my complaint and all the notes were eventually sent to an anonymous expert reviewer. I received a copy of his report just over a year after I lodged the complaint. Whatever I had hoped for it wasn’t what I got.

An Iatrogenic Death: Part 9

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My mother and aunt stayed at the hospital all night. After stopping at Mum’s place to pick up some fresh clothes, my sister arrived at the hospital at about midday (day 51) to find my mother on edge because the hospital staff had again been urging her to agree to stop the ventilator. Mum had been pleading for that not to happen because she didn’t want Dad to have to gasp for breath at the end. She asked my sister if she thought the ventilator was still working because it sounded different to her. She said the medical staff had done something to it while they were there earlier in the morning. My sister could see that Dad’s chest was still moving, “and the red numbers were showing,*” so she supposed it was still working. By then Dad’s blood pressure was 60/30. Mum went off to have a shower and change.

After Mum left the room the nurse said she needed to clean Dad’s eyes. “She dipped a ball of cotton wool in some mixture and touched Dad’s eye lid. His blood pressure disappeared. It went wild – a jagged line, numbers appeared and disappeared. Auntie J ran to get Mum. I looked at the clock. It was 12.45pm.”

My father had been on intermittent mandatory ventilation (IMV) for more than seven weeks. IMV will support any breathing effort a patient makes and provide breaths at regular, mandatory intervals if the patient doesn’t make any effort. As patients recover they can be weaned off the ventilator by setting the mandatory rate lower (less than 7 breaths per minute) to encourage more spontaneous effort. The normal resting respiratory rate for an adult is 12 – 20 breaths per minute.

On day 49, the day Dad began bleeding and the day of the final conference, Dad had been on 30% oxygen with an IMV rate of 10, and his spontaneous rate had ranged between 0 and 20. His O2 saturation levels were 99-100%.

On the morning of the following day the doctors decided among themselves to cease active treatment. At 2pm they decided to stop measuring and recording Dad’s O2 saturation levels. At 9.30pm we were called with the message that he was not expected to live much longer. At 1am, after the family had gathered at his bedside, the IMV rate was dropped to 6 and the concentration of inspired oxygen was dropped to room level – 21%. In response, his spontaneous breathing rate increased to 12 for the first couple of hours but then fell until by 10am he was taking 3 spontaneous breaths per minute.

At 11am, about an hour before my sister arrived at the hospital, the intermittent mandatory assist was switched off completely. I presume that accounts for the ventilator’s different sound that my mother had noticed. Though terribly weakened by illness, poor nourishment and muscle wasting Dad had to breathe on his own for the first time in more than seven weeks. Worse, he had to do it through all the dead space of the ventilator, and still he fought to stay alive. He was managing 12 breaths a minute until the nurse started “cleaning” his eyes.

Why did she decide that Dad’s eyes needed cleaning, at that moment, just after Mum had left the room? It can’t have been because she thought it necessary to protect his corneas. After all, he was about to die. Of course, it’s always possible that she wasn’t much of a thinking person and just did it because it had been ordered and was time, though why that order wouldn’t have been revoked along with all the others is beyond me.

Or perhaps it was because she was an experienced ICU nurse who was aware of the oculocardiac reflex which can be triggered by applying pressure directly to an eyeball. It can cause bradycardia (a slowing of the heart rate to less than 50 beats per minute), a variety of arrhythmias and asystole (complete cessation of the electrical activity of the heart). The severity of the response can be worsened by hypoxia (poor oxygenation) such as might occur when someone who is weak, starved and desperately ill and who hasn’t breathed on their own for nearly two months is suddenly forced to do so.

So she applied pressure to Dad’s eyeball. His heart went into asystole. The heart monitor display went “wild”. My aunt rushed to get my Mum. The nurse disconnected the ventilator. My father took a couple more breaths then his eyes opened and he was gone. All the tubes were removed and my mother was allowed a little time with him to say goodbye. His ordeal was over. Mine, of a very different sort, was about to begin.

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* both quotes are from my sister’s statutory declaration.

An Iatrogenic Death: Part 8

The following morning, my brother rang me from the hospital in some agitation. He said it looked to him as though, apart from ventilation, all Dad’s treatment had been stopped. As well, he’d been told that Dad had passed more melaena overnight. I told him I would ring the surgeon to find out about the treatment and ask if he would do selective angiography to embolise the vessel if it was still bleeding.

A few hours later, before I’d been able to speak to the surgeon, my brother rang back to say that he’d been mistaken about Dad’s treatment being stopped. He’d asked one of the ICU doctors about it and had been told that only Dad’s vitamins had been stopped.

It wasn’t until about 4.30pm that the surgeon called me back. I asked him about the angiography. He said that Dad would have to be actively bleeding for them to be able to find the bleeding point and, as far as he knew, Dad was not still bleeding. I asked if Dad would be transfused again. He said he didn’t think that would be appropriate. I asked if they would continue dialysis. He said he hadn’t discussed that with the renal physician but that we, “need not strive officiously to keep alive”*. He said he knew how hard it must be since I only had one father. I said, “So you’re just going to let him go gently.”**

About 9.30pm that night my mother rang. The hospital had rung to tell her that Dad’s blood pressure had dropped dramatically and that he wasn’t expected to survive much longer.

My husband and I got to the hospital at about 11.30pm. There we saw that my father was connected only to the ventilator and an IV line delivering morphine in 5% dextrose, 100ml every 6 hours. I hadn’t expected that. Not doing selective angiography or not giving more blood is not the same as stopping everything but morphine and the minimal fluid required to deliver it, particularly not in a man who is unable to concentrate his urine. Dad had been passing around 2 litres of urine a day and they give him 400ml to replace it?  What else is he going to do but go into shock again?

When we arrived Dad’s blood pressure was 70/40, pulse 88, sinus rhythm, peaked T waves (yesterday’s K+  5.1), temperature about 38, urine output next to zero. Furthermore, far from not being actively bleeding the charts recorded that he’d been passing melaena and bright blood all day. If I’d had some minimal hope yesterday that with a bit of determination something might be done to save Dad’s life it was now well and truly gone but, fighter that he was, he was still making an effort to take a breath on his own occasionally.

My mother, sister and aunt had arrived before us. I asked my aunt if she knew they had stopped treatment. She said no and asked the nurse why Dad was not being maintained. The nurse replied that he was being maintained. He was getting calories. I saw red but said nothing because my mother was there and I didn’t want her upset any more than she already was. The nurse then started a discussion with, of all people, my 9 year old niece on the merits of turning off life support machines as a kindness to the patient. My niece said that would be wrong.

Around 1.30am my mother and aunt left the room to lie down and rest. At about 2am Dad started throwing off a few ectopic heart beats making us think it might be over soon but after a little while his rhythm settled down again. Soon afterwards the nurse said she wanted to change Dad’s dressing. I said that we might go home because it could be minutes or hours. The nurse said, “It’s the ventilator, keeping him oxygenated. Perhaps we could consider …” Again I saw red but this time I was too furious to keep silent. I cut her off saying, “You will not turn off the ventilator.” I told her how surprised I was to find everything stopped, that the surgeon had given me no indication that this was what they were planning, that it was a joke to say that Dad was getting calories and that she could just wait till Dad’s K+ levels got high enough to kill him which shouldn’t be too long given that they’d let him become anuric. Then we left.

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* A quote from the poem The Latest Decalogue which means something rather different to what is intended by most people who quote it these days.

Thou shalt have one God only; who
Would tax himself to worship two?
God’s image nowhere shalt thou see,
Save haply in the currency:
Swear not at all; since for thy curse
Thine enemy is not the worse:
At church on Sunday to attend
Will help to keep the world thy friend:
Honor thy parents; that is, all
From whom promotion may befall:
Thou shalt not kill; but needst not strive
Officiously to keep alive:
Adultery it is not fit
Or safe, for women, to commit:
Thou shalt not steal; an empty feat,
When ’tis so lucrative to cheat:
False witness not to bear be strict;
And cautious, ere you contradict.
Thou shalt not covet; but tradition
Sanctions the keenest competition.

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** A Christian palliative care specialist suggested that my saying, “So you’re just going to let him go gently,” could have been interpreted by the surgeon as giving permission to withdraw treatment. It would be a reasonable argument but for the fact that treatment was stopped at 6am that day, many hours before I spoke to the surgeon.

An Iatrogenic Death: Part 7

On day 42, two days after the last CT scan, blood and fresh clots were discharging from the sinus in the abdominal wound. The surgeon ordered angiography to look for the source if there was, “excessive blood loss”. To me he said he was thinking of performing embolisation, or even operative ligation, if the bleeding vessel could be identified. The bleeding continued over the next two days but there was no embolisation and certainly no operative ligation.

One good thing happened over those two days. Dad’s sedation must have been lightened because he was able to respond appropriately to my mother, by nodding, when she spoke to him. It was the first time in 6 weeks that there had been any communication between them and it gave her joy and helped her to hope.

However, three days later (day 45) Dad’s temperature rose even higher, to above 40C (104F). He was having rigors, which typically means that there are bacteria in the blood stream, and he developed a pneumothorax as a complication of mechanical ventilation. Blood cultures grew group D strep and MRSA – the same organisms that were still growing in his abdominal wound and that had grown from swabs of the fluid that had been discharging from his drains. He was started back on the antibiotics Vancomycin and Netilmicin.

On day 49 I went with my mother and my father’s sister to the hospital. Dad was still feverish. I decided I’d finally had enough of waiting for the surgeon to do something definitive about clearing out the pus in Dad’s abdomen and went to the charge nurse with a request to see the surgical registrar saying, “He can’t go on like this.” She replied by saying that was an excellent idea, which gave me some cheer, but then followed on with comments about quality of life and suffering. Immediately I understood that she was thinking not in terms of more effective attempts at cure but of ceasing any attempt at all.

Before very long we were in a meeting with the surgeon, the top ICU doctor and the charge nurse. We were told that Dad had passed about 500ml of melaena stool overnight. Endoscopy had been performed and what they called a stress ulcer had been found in his duodenum. It had been injected with sclerosant to close the ulcer and Dad had been started on drugs to decrease stomach acid formation and reduce the likelihood of it re-opening.

The surgeon started off by saying we had to recognise that the battle was lost and that nothing more could be done, and then said that the medical team needed guidance from us as to how to proceed. The ICU doctor mentioned Dad’s jaundice and his kidney failure and suggested the ulcer was part of the sydrome of multiple organ system failure.

I knew that Dad’s renal failure was at least potentially reversible. Furthermore, about 10 days after he became jaundiced the surgeon had told me that Dad’s liver was not bad but just overloaded with the products of the breakdown of red blood cells. In addition, I’d been taught that stress ulceration associated with multiple organ system failure is characterised by multiple bleeding points in the stomach, not a single ulcer in the duodenum. Again the medical people were telling different stories and I didn’t know what to believe so I asked about the bleeding; if it was due to an ulcer wouldn’t that be better than bleeding from an eroded vessel? The surgeon revealed that he was dubious about the gastroscopist’s diagnosis. He believed it more likely that the bleeding was from a vessel eroded by the infectious process.

The charge nurse asked us to imagine how Dad was feeling. Would he want to continue suffering? If he survived he would be disabled. Would he want that? I asked if he was suffering and she replied, “No.” My mother said, “He loves life.” My aunt agreed. We all agreed that we wanted them to continue trying to save his life, to give him whatever chance he had left to fight back. The surgeon lost patience and asked, “What shall we do? Shall we give him 20 units [of blood] and then stop?” I asked if there was nothing at all to be done. Perhaps a pancreatectomy? The surgeon huffed and said that would be euthanasia. Someone mentioned heroic measures and someone else said that everything done in ICU was heroic and then the ICU doctor stepped in saying, “We can’t ask them to make a decision like that. We’ll just keep on.”

We left, expecting them to do as they said they would and keep on, but the talk of passive euthanasia had rattled me, especially when there was no clear story of precisely what was wrong with Dad. I didn’t trust them anymore, certainly not enough to expect that they would be interested enough in what went wrong with Dad to want to do an autopsy. Not being Dad’s next of kin I couldn’t request one so, on the way out, I asked my mother to do that if Dad should die of this illness.

An Iatrogenic Death: Part 6

Materially speaking, the body of a living human being is a machine-like system of marvellously complex sub-systems. A disorder in one part will affect related parts in regular ways, regularly producing symptoms and signs that develop in a more or less regular way and are referrable to the subsystem(s) affected. This regularity is what makes diagnosis possible.

Without a diagnosis the doctor cannot begin to devise a rational plan to treat the cause of an illness (assuming the cause is known and a treatment exists). And if knowing the diagnosis and that treatment is available the doctor fails to treat, then what good is s/he?

There is an art to making a diagnosis. First, a body of knowledge must be acquired (and kept up-to-date) about the structure and workings of the human body’s systems and sub-systems. Second, the history of the illness is obtained. Third, the patient’s body is carefully examined because, “more is missed by not looking than by not knowing”. Fourth, appropriate tests may be ordered. This is done to find the correct diagnosis among a range of diagnositic possibilities and, as a corollary, to decide on the correct treatment. Some tests may need to be repeated during the course of an illness to track the progress of the treatment regimen so that adjustments can be made, if necessary, in good time.

Before my father’s 2nd operation his symptoms and signs pointed clearly to sepsis associated with a severe problem in his abdomen. His own testimony was that his pain was the same as when his appendix burst and his appearance was consistent with a diagnosis of peritonitis, in which case early operation to remove the cause would be vital. On the other hand, the medical staff were concerned about the possibility of pancreatitis, in which case re-operation might not be necessary. As the expert reviewer later wrote, “[t]he diagnosis of bile peritonitis is difficult to differentiate from pancreatitis in the immediate post-operative period,” however there is one relatively simple test that could have been done early, but wasn’t done at all, and that could have confirmed bile peritonitis and led to less delay in returning Dad to theatre. That is abdominal paracentesis. Why wasn’t it done? I have no idea.

The day before my father’s 3rd operation (on day 10 after the first operation and after several days of continuing fever) a CT scan with IV contrast was performed (see Part V). It was reported as being consistent with acute pancreatitis and showed some fluid collections. At operation, apart from the pus in the wound, serous fluid and a little pus was found. Sum drains x 2 were placed at the head and tail of the pancreas to drain the fluid collections.

The 4th and last operation (on day 16) was purportedly done, again, to look for a focus of infection because of Dad’s continuing fevers which were in the range 38.5-39.5C (101-103F). The possibility of doing a white cell scan (which would show where such a focus could be) had been mentioned but was not done before the operation. In addition there was no repeat CT scan done before the operation. So, lacking any particular imaging guidance as to what had been going on or where he might most fruitfully search, the surgeon faffed about looking for a possible diverticular abscess and managed to not find anything and this when the fluid discharging from the sump drains had gone from clear reddish-brown turbid muck.

A mere 3 days later (on day 19) the white cell scan was finally performed. It showed all the white cells in the pancreas and in the wound. Knowing where the pus was might have been a suitable prompt the surgeon to perform the first of the, “planned second daily laparotomies,” he had said the best units do but when the time came he managed to resist whatever impulse he might have felt to do what surgeons are supposed to do when there is pus about, i.e., clear it out. His excuse later was that, “everything was wooden,” but he’d known that when he talked about what the best units do. So what had changed? I have no idea.

By day 26 my father was jaundiced (high serum bilirubin and normal liver enzymes) and had been started on dialysis. Cultures of material from both sump drains were growing ++++ group D strep and a sinus had appeared in Dad’s abdominal wound.

Sinuses occur when pus, continually forming because of the presence of foreign material such as necrotic tissue, takes the pathway of least resistance to discharge from the body. That is, they indicate the presence of an abscess and will not heal until the abscess is cleared.

A narrow gauge catheter was inserted into the sinus and suction applied but next to nothing drained through it even though, as nurses often noted, “offensive fluid,” often in large quantities, kept welling up through the wound. ICU staff replaced the catheter with a wide bore tube better suited to draining thick material but because of some bleeding through the wound the surgeon removed that tube and put a narrow gauge catheter back. This action reminds me of Einstein’s definition of insanity, i.e., doing the same thing and expecting a different result.

The ICU staff raised the possibility of the surgeon performing another laparotomy but he refused. He said he had already done what he could to drain the area. Later, the expert reviewer commented saying, “It is correct to say that pancreatic necrotic material will not flow out of a small tube. However, this material will not flow out of any size tube. This is the major reason why laparotomy is done in this condition; in order to physically remove the necrotic material.” But there were no more laparotomies.

The day after the sinus appeared there was a family conference. The surgeon said that Dad was not reacting in a normal way, again suggesting that he was somehow to blame for what was happening to him. We told the surgeon we wanted a second opinion.

The day after that another CT scan with IV contrast was performed. It was reported as follows:
“Suspect gastric outlet obstruction. Pancreatic head still enlarged. Five cm fluid collection to R in anterior pararenal space. Fluid below R lateral margin of the liver, with some air. Abdominal wound dehiscent. Left paramedian drain passes into a largely air containing cavity medial to L margin of liver.
Conclusion: Significant collection in R subhepatic space. Significant decrease in inflammation around pancreatic head.”

It’s a pity that the white cell scan wasn’t repeated too. That might have saved Dad from a mistake the radiologist made when, during the scan, he noted a cavity that he thought could be a R paracolic abscess and inserted a catheter into the space whereupon 850ml of “foul fluid” drained out. The next day, the surgeon told me he thought the catheter was not in an abscess cavity but in a loop of bowel. The next CT scan, performed three days later, proved him correct.

This last scan was performed without contrast so there was no way even for a savvy radiologist to detect parts of the pancreas that might have been necrotic. In addition, it was interpreted without benefit of the presence of previous films for comparison. It was reported as follows:
“Low density collection in region of pancreatic head. R sub hepatic drain lying lateral to peri-pancreatic collection. Drainage tube on R – tip in ascending colon.” Oddly enough, the catheter was left in situ until it fell out over a week later.

Six days later (on day 36) a culture of swabs from Dad’s wound sinus grew MRSA (multi-resistant Staph aureus) and he was moved into isolation. I wasn’t surprised by this development. I’d been waiting for it to happen – not because of the cocktail of antibiotics Dad was receiving but because I’d been watching how the nurses moved between patients, especially on weekends when staffing numbers were down. In ICU, of all places, they were going from one patient to another without washing their hands in between.

The following day (day 37) a T-tube cholangiogram was done because bile was leaking from the abdominal wound. I’d seen the report which stated, “bile leak to ?peritoneum”. Considering that a bile leak was part of how this whole sorry thing started off, that was a major worry but when I spoke to the surgeon about it he said that there was no leak into the peritoneum because Dad no longer had a peritoneal space. According to him Dad had a fistula between his pancreas and duodenum, bile was entering the duodenum through this passage and, eventually, the fistula would close off and cause no lasting problems.

His story contradicted the radiologist’s report. I was at, or past, the point where I didn’t know what to believe any more because the stories from different people didn’t match or they defied what I knew of medical science. Later, the complaints unit’s expert reviewer had another story again. According to him the cholangiogram showed that the bile duct was obstructed distally (down stream) and that the contrast (and bile) was passing into the retroperitoneal space.

Three days later (day 40) both sump drains fell out and one last CT scan was done, without contrast. The report stated, “Drain in R lateromedial abdomen gone. Decreased size of soft tissue density in sub-hepatic region contiguous with pancreatic head. No new fluid collection.”

All through this time, as he lay helpless and heavily sedated, my father’s fevers had persisted unremittingly. As far as we in the family knew valiant searches had been going on to find a cause but all attempts had failed and nobody knew why my father was so sick. Despite everything, despite the pus, the smell, the fevers and the investigations there was no definitive diagnosis, there had been no more surgery and now there weren’t even any drains left in place. If I’d known at the time how sloppily ad hoc it had all been I might have made a lot of noise, or maybe not. Getting carers offside can be a very bad move. Afterwards, when I’d read the notes and had time to try and make sense of them I wrote, “It seems as though the whole history and evolution of my father’s illness was forgotten every day and not related to his clinical state. There were all these measurements and observations but no one integrated them into a whole picture. It doesn’t seem as though there was any real management plan, just a series of actions and reactions.”

Intermission

I won’t be publishing any more posts for a week or two.  First, there are family obligations I have to meet and second, having managed for all these years to put out of my mind just how much of a major stuff up Dad’s care was in the last 4-5 weeks of his life, going through the notes again has reminded me how confusing it was.  It’s still hard to get my head around – like trying, after the event, to plot the course of a ship that has a broken rudder and no one at the helm.

An Iatrogenic Death: Part 5

By the second day after the second operation things looked to be improving. Dad’s temperature and blood pressure were normal, his heart was in sinus rhythm and his white cell count was up to around 20,000. The drains to the gall bladder bed, which had been discharging very little, fell out.

Two days after that, however, his temperature started rising again, with peaks at night. Two days after that, his insurance coverage for care in the private hospital ran out and he had to be transferred to the public section of the hospital. The granulocyte colony stimulating factor was stopped in case that was causing the fever. By then some results had come back from his blood cultures. They were reported to be growing E. coli and Klebsiella.

The next day Dad was sent for a CT scan with IV contrast which showed what the surgeon called, “smoke and fire” around the pancreas but which the radiologist reported as follows:
“Small amount of free fluid around liver. Rounded focal area between hepatic flexure and fundus of stomach merges with large amount of inflammatory tissue with complete loss of fat planes around head of pancreas and greater omentum down to the pelvic brim. There is a fluid collection related to the head of the pancreas. ?duodenum. Can’t tell without knowing what surgery performed. Inferiorly the contours suggest fluid rather than distended duodenum. Consistent with acute pancreatitis.”

From here on everything became the sort of mess you might expect from the sort of team that would send a patient for a CT scan without providing the sort of information the radiologist would need to properly understand the films.

The following day the surgeon took Dad back to theatre again. He told my mother he was looking for pus and he certainly found it. Dad had a wound infection that was noted to contain, “copious pus”. Culture grew coliforms and plentiful group D streptococcus. Because he thought it possible that he might have unknowingly divided an accessory pancreatic duct (the duct of Santorini) at the original operation the surgeon applied a loop of duodenum to the head of the pancreas as a drainage procedure*. He then placed large sump drains at the head and tail of the pancreas, opened the bile duct, inserted a T-tube and did a cholangiogram which showed that the biliary tract and its drainage were OK, and then, because Dad’s nasal endotracheal tube had been in place for over a week, he did a tracheostomy.

Two days later, with plentiful amounts of straw-coloured fluid coming from the sump drains but with Dad’s temperature still up, the surgeon told my mother that he felt he had tried everything. However, the next day he ordered the commencement of peritoneal lavage with normal saline, “for irrigation of abdomen via drains”. Unfortunately, the fluid was instilled via the infected abdominal wound.

The drains were not dependent and were not attached to suction. A note the following day states that over a litre of the irrigation fluid had been retained. The irrigation was stopped. By then the fluid draining from the sump drains had become reddish-brown and turbid. All cultures were coming back as no growth or equivocal. All antibiotics were stopped and there was talk of getting a radionuclide white cell scan done.

Among all the many things that had worried me since that evening when we’d all rushed to the hospital because Dad was in septic shock and it was feared he would die, was the possibility that Dad would go into renal failure. Shock by itself can cause organ damage due to poor oxygen supply but, in addition, I’d heard one of the doctors say that Dad had been started on gentamicin. This is a good drug for treating infections due to intestinal and biliary flora but it is toxic to the kidneys. This is especially so when, as in my father’s case that day, the patient is in shock and has a poor urine output. As a student I’d had it drummed into me that you don’t give gentamicin to anyone with a poor urine output. So one of the measures I would try to get a look at if Dad’s charts weren’t being guarded too zealously was the serum creatinine. By the second day after the third operation Dad’s serum creatinine level had risen above normal and continued to rise daily afterwards. The only hopeful thing was that, given time, this sort of kidney failure is potentially reversible.

Six days after the third operation (and 16 days after the first), Dad was taken back to theatre again in search of an abscess because of his persisting swinging temperatures. Afterwards, the surgeon said he checked the bowel for a possible diverticular abscess, put a drain in the right paracolic gutter and closed with Marlex mesh. To my mother he said that he didn’t find anything but he felt that things were going better than expected. To me he said that he closed with mesh for drainage and to make re-exploration easier. The thought of more operations was worrisome to me but he said, “all the best units do planned second daily laparotomies,” and then he remarked that the next complication, secondary haemorrhage due to infection eroding a major vessel, would be rapidly fatal. The next 24 hours, he said, would tell.

Plainly, however, this was not one of the “best units”. There were no, “planned second daily laparotomies”. Though he survived for another month, that operation was my father’s last.

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* The second professor later said that if the duct of Santorini had been divided it would have drained into the bowel anyway, so all that work was unnecessary, not to mention being an added anaesthetic risk.

An Iatrogenic Death: Part 4

Dad was taken back to theatre for an emergency laparotomy the following afternoon. By then more than 24 hours had passed since the surgeon had been called to review him because of his high temperature, low blood pressure and fast heart rate. He had been diagnosed with septicaemia and adult respiratory distress syndrome (ARDS). He had also been noted to have a very low white cell count (WCC) – less than 1,000 cells/μL (normal range: 4,000 – 11,000)*.

The consent form for the operation states, “laparotomy, ?bowel resection”. Bowel resection? I’d forgotten about that and now, as I think about it again, I really can’t understand why, in that situation, the surgeon was considering that bowel resection might be necessary. If he was thinking something might have gone wrong related to the work he’d done earlier on the duodenum then I can’t see how he could have done a simple bowel resection. The relations there between the duodenum and the pancreas seem to me to rule that out. If he was thinking something might have gone wrong in some other part of the bowel then we get into the area of violating the rule that says, “Don’t multiply causes”. Or maybe I can’t understand because I just don’t know enough.

In any case, at operation it was found that Dad had peritonitis due to bile leaking from a hole in his gall bladder. He also had pancreatitis. His gall bladder was removed and a couple of small drains were put in place. He was prescribed a plethora of drugs to stimulate white cell formation, to maintain blood pressure and regularise his heart beat, to treat a broad spectrum of micro-organisms, to control his blood sugar and to manage his pain.

What caused the hole in Dad’s gall bladder? When we visited him on the evening after the second operation I heard one of the nurses telling him that his gall bladder had “burst”. Later I asked one of the registrars who, not remembering the contents of the pathology report, suggested that bacteria within the gall bladder could have produced an area of focal necrosis. When I rang him after Dad’s death, the surgeon suggested that the perforation might have been caused by the developing pancreatitis. He also suggested that a condition called primary bile peritonitis could have been responsible. An outside surgeon we had engaged to provide a second opinion about four weeks into Dad’s illness said the perforation had occurred during the original dissection. Obviously, he’d had access to the gall bladder pathology report and, obviously, so had the surgeon yet they’d come up with completely different explanations. One laid the blame on the surgical procedure, the other laid it on the patient.

So I rang the pathologist to get his opinion. He said said that the gall bladder had been of normal size with signs of only minimal chronic inflammation. It had nothing within it that would account for the tiny, pin-hole perforation that was found. He agreed that his findings were consistent with an event such as needle-stick injury.

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* The surgeon attributed the low WCC to there being something odd about Dad’s immune system and this supposed oddness was later referred to from time to time as though it had a bearing on why Dad’s progress, or lack of it, was so mysterious. When I first heard the story of the low WCC and Dad’s odd immune system I wasn’t in much of a state to think critically about it but before long I remembered a lecture given by one of the surgery big shots at the hospital where I’d been a student. According to him, a low peripheral blood WCC could be expected in peritonitis since the white cells migrate to the abdominal space to deal with the inflammation going on there. There was nothing odd about Dad’s immune system at all.