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Tuesday November 10, 2009
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VIEWS: DAVID NEWMAN
[Oct 20 2008]
by Hal Newman
David Newman should be writing this follow-up to his column titled 'Vignettes' of July 10, 2008. Sadly, his computer keyboard is dormant and his tribal elder's slippers are tucked neatly beneath his bed.
David is in the hospital battling cancer and all of the systemic failures derived from the insidious disease that has crawled out of his colon to pollute the rest of his body. His wife, my stepmom Anne, has been his constant bedside companion throughout the ordeal.
He had significant discomfort in his gut and was getting dehydrated when he took the step over the stoic threshold and into the ER of the hospital that dominates the neighbourhood skyline in his adopted hometown of Hamilton, Ontario. Too many hours spent in painful agony in a gurney led to admission to a ward on a floor.
It was all the tubes that took my breath away when I visited David in his room. My sister and I had roadtripped seven hours to get there and just when you think you're really prepared for anything, there's our father with tubes running this way and that. Multiple IV lines, oxygen cath, NG tube, catheter tubes - lots of tubes and corresponding electronic alarms and beeping sounds.
David was in there amongst the tubes. He was conscious and he was fairly coherent between blasts of self-administered Morphine to try and quell the pain drummers beating out a tragic tam-tam beat somewhere deep in his guts.
After spending some time with my dad, I believe the cancer has begun to migrate throughout his system as he had several quite bizarre disconnected stream-of-consciousness episodes wherein he described conversations he seemed to be having in his head – nothing bad or sad so I figure that’s okay – if he feels like playing an imaginary trumpet in response to my sister describing some of the flowers in the garden, well more power to him.
He'd definitely want me to tell you about one of his nurses, a certified gem by the name of Simon. Simon sees David as a person, not just a patient. Simon's the person who has bent protocol to see to it that David is to be assessed by the palliative team. And the lady from the volunteers who stops in to spend time with Anne. And the gentle physiotherapists who try to coax David's failing body out of bed and up into a wheelchair for a spin around the floor.
Not the docs though. Not more than a sentence to be wasted on people who seem to have forgotten why they chose this path in the first place.
No one knows for sure how much or how little time he has left however he seems to have made spiritual peace with himself, Anne and the rest of those he holds close. He’s still pretty pissed off about having cancer so he directs that anger at his surgeon and physicians and nurses. The updates from the hospital have been rife with setbacks so I don’t know how many times we’ll hear that ‘his condition has worsened’ before he finally reaches terminus Eldorado.
David is intellectually curious and researching pandemics, the Black Death, and the ethics related to surge are important forays into a world less familiar and comfortable. Gradually that world has become a significant part of his world and at 70something he became immersed in the inner-working of Hamilton's first community emergency response team. He proudly showed off the emergency kit and helmet he kept in the trunk of his car on the last roadtrip he and Anne made to Montreal before he was diagnosed with cancer.
I believe the chapters in Big Med written by David A.H. Newman are drawing to a close. If he makes it back for another write or two or three or ten, he can print out this column, crumple it up and throw it in the garbage can beside his desk. That would be sweet.
Either way, I think he'd want his readers to know that he enjoys exploring your world and learning more about emergency management, public health, and disaster preparedness along the way. He especially likes the interactions with readers who redirect his pathways or take him to task for not getting more indepth or validate his thought processes and the words he puts to 'paper' in Big Medicine.
Likely he would close a column with the simple words: 'Be well.'
Instead, I'm going to close this column with a passage my father wrote about what it means to be a First Responder:
"You may not receive heartfelt thanks for what you do. Sometimes you will be blamed, because people suffering pain and loss need to blame someone. It goes with the territory and only time can redress the injustice. Learn to accept the hurt with the good things, and don't be too hard on yourself.
"If you can give support and show compassion beyond the minimum the situation seems to call for, you and your colleagues will long be remembered with gratitude, and you will build reservoirs of credibility and affection for you and others to draw upon; and you will know that what you are doing is worthy and significant."
Be well. Practice big medicine.
[Jul 10 08]
I have incomplete recollections around my most recent stay in hospital. My wife, Anne, who has suffered through this time perhaps even more than I have, helped me fill in some of the blanks – one possible side-effect of chemotherapy is memory loss, and since I experienced just about every other side-effect, why not forgetfulness too?
The Colon Surgery Experience
I had my first experience of a colonoscopy, January 29th 2008 when I learned I had cancer. Before agreeing to the surgery, I was warned that 20 percent of patients experienced a blockage which could require further surgery; this could occur soon after, or years later. At the time I commented; “So what if I say no?” and we (the surgeon and I) both laughed, because it was so obviously a “no-choice” situation.
February 27th 2008 I was operated on, and emerged with half my colon gone along with my appendix and snippets of my small intestine. I had been in good shape going into the surgery, and recuperation went according to schedule.
The important event in recuperation is having one's bowels functioning. The whole ward seems to be focused around that first time, and once that happens, solid food appears, and if that goes well, its up and out in a very few days.
To Chemo or Not
Recuperating at home went well and by the end of March I felt ready to tackle the issue of chemotherapy. It wasn't a clear-cut decision given my age, 77, and that I am diabetic (one pill a day keeps it in check). My life expectancy is short-term – the odds of a diabetic living past 80 are not good. Being a cancer survivor doesn't improve the odds. Given that background, chemotherapy might, at best, improve the situation marginally.
However, life expectancy numbers are actuarial conclusions assembled from the history of the lives of very many individuals. The statistical meaning is that of the population of all people of my age and with my history and conditions, most will not live past 80. Statistically, some will die earlier, and some will live well past 80.
Actuarial tables only apply to large groups. As the size of the reference population gets smaller, the data becomes less meaningful (there are too few people living to say 110 to be able to predict life expectancy beyond that point) and at the limit, where the population is just one person, actuarial data is meaningless. Each person is unique.
Then it becomes a game of “What If.” “What If” I don't fit into the mainstream of the actuarial prediction? What If I'm a 'dot' on the chart out on the favorable extreme of those who survive well beyond their 80th birthday? Then the benefits of chemotherapy might well justify the discomforts and hazards of the procedure. At least that's how I argued, and convinced myself to go ahead.
An additional factor was the results from biopsy samples taken from my lymph system during surgery: four of sixteen samples showed cancer cells at a microscopic level; which meant such cells were floating around my system and potentially could proliferate; chemotherapy, statistically, would wipe most of them out along with any incipient cancers.
On the other hand, without chemo, if additional cancers did develop, it or they would begin to affect me in two years or so. If one believes the actuarial models, whereby I'm dead within 3 years, it's not something to worry about. But if I should live beyond that, it reinforces the argument for chemotherapy.
Eventually, I signed the cancer clinic's “Informed Consent” Form because it was the only way to get to the treatment. “Informed Consent” was a cruel joke: I was not informed beyond a sketchy outline of what was ahead; the whole situation amounted to coercion – a polite extortion which made it clear where the power lay: the clinic was of the specialists, by the specialists, for the specialists.
I was offered a choice of three chemo approaches: once a day for five days and then the rest of the month to recuperate (for six months on the same pattern), or having a portable pump installed running continuously for four months, or taking pills. That was the total of the information I was given. I chose the first option. At no time was I told about any alternatives to chemo.
We did attend a lecture on chemo side-effects given by a nurse. It went on and on, rapid-fire, listing the main problems we might encounter, and what we might do about them. There was no time to absorb it all; there were too many things that might occur. There was nothing about the actual treatment process.
The Cancer Clinic Relationship
During the weeks prior to starting chemo, I had met with an oncologist a few times for assessment. In common with many specialists, he was not a great communicator or listener. My diminished hearing, and his rapid delivery – mostly using abstruse medical jargon – didn't help. I can't judge his professional capacities, because I don't know anything about oncology or chemotherapy.
While the cancer clinic claims to believe in informed consent, any and all information, beyond the most sketchy introduction, had to be searched for relentlessly: it was very much like a scavenger hunt. If asked a direct question, the doctor or his nurse might give an answer of sorts, but it usually needed interpretation beyond our capacities to understand. Part of the problem is we seldom were able to ask the right questions on the spur of the moment: it takes time to work out the implications.
Once, as if conferring a great favor, the nurse, as an afterthought, handed us a booklet on colon cancer and its treatment (prepared by a commercial sponsor). It was loaded with valuable information and should have been included in an information package to be given to sufferers up front, but which no one thought to assemble or provide. This was true of the cancer clinic over-all. There were many volunteers available and they were universally helpful and cheerful, and doing what they could to make us feel comfortable, but they couldn't begin to answer our questions because they weren't professionals. And the professionals were nowhere to be seen. It was a place with a culture of non-communication, which I have to assume comes from the top.
The Chemo Procedure
May 5th 2008, I turned up for my inaugural chemo experience. First came some blood work, and a bit later the actual session which lasted all of three minutes! First came an injection of Leucovorin to make the main drug more effective (though the Leucovorin has its own hazards), and then a much larger dose of 5-Fluorouracil. Finally, a smaller shot of saline solution to wash the hazardous stuff away from the injection site. That was it. I don't know if the amounts I received were typical or not -- it was 85 mg of the Leucovorin, and 825 mg of the main one.
On the last of the five days (Friday), I got a glimpse of patients equipped with a pump. The pump and IV etc. have to be changed every week; which meant checking in at the cancer clinic for several hours. This was just one of those details deemed not worth telling a prospective patient about.
The actual chemo seemed to go well, though food tasted peculiar. Having completed my five days of treatment on the Friday, I felt fine on the Saturday. But Sunday the side-effects started in earnest. I first noticed a wicked sunburn: a side-effect of the Leucovin (listed among the dozens of possibilities), but I had no idea how sensitive to sunlight I had become. Then, progressively, loss of appetite – I had to force myself to eat anything; variously the runs, and constipation; queasiness; vertigo; and so I descended into the nightmare that just over a week later put me in 'emergency'.
I don't know if the severity of my reactions could have been predicted; though it might have been prudent to start me on lower levels of the same drugs to see how I reacted.
Another unhelpful factor, was a prescription for “Iron.” My red cell count was slightly low, and the oncologist I was assigned to wanted to build me up so I'd be better able to withstand the chemo -- starting me on Ferrous Fumarate (300mg daily) several weeks before the chemo was scheduleds to start. The oncologist didn't mention it, or prescribe anything for it, but my pharmacist pointed out that the stuff was severely constipating and recommended a stool softener to go along with it. I took the “Iron” for three weeks, and it was severely constipating. I struggled with it, and decided to stop taking it before starting chemo; on the premise that I should allow the chemo room to do its own damage unimpeded by the havoc the iron pills were doing. In hindsight, constipating someone recently recuperated from major colon surgery seems something less than brilliant.
It probably was toward the end of the week after chemo that a complication – a blockage – occurred, though I didn't know it at the time.
A Low Point
It was Thursday May 15th or Friday May 16th: a week after completing my first round of chemotherapy. I don't recall if it was night or day, if I was on my own – whether Anne was home or not. (Anne tells me she was sleeping upstairs, but after my fall she moved downstairs too). I had been using the downstairs bedroom because I could no longer handle the stairs.
It had been a vicious week of spiraling downwards. It seemed as if I was encountering every one of the “side-effects” outlined in the forty-four page handout thoughtfully provided by the cancer clinic.
I remember making my way to the bathroom (adjacent to the bedroom I was using). Quite suddenly I collapsed – finding myself on the floor, having smashed into the sink cabinet on the way and destroying one of the cabinet doors. I was personally undamaged though. I lay there on the floor for a while. I tried to call to Anne, but couldn't. I then tried to get back to the bedroom only a few feet away. I couldn't even crawl, but wriggled and pulled my way along and reached the foot of the bed where I lay for another while, contemplating the impossible effort needed to get up on the bed. By superhuman exertion I managed to get my arms up and then pulled and pushed my way, bit by bit, on to the bed, where I lay exhausted. I think that's when I understood that if I weakened much further, I was going to die.
I don't remember much about what else was happening to me. Anne tells me I was hiccupping constantly, and that I threw up a few times. On Sunday, May 18th, she phoned the cancer clinic and spoke to whoever was handling calls on the weekend. She was told to get me to emergency right away.
Anne phoned our neighbors, and with their substantial help was able to get me standing, and into the car. We live just as few minutes from McMaster Medical so that's where we headed. With help, I was able to transfer into a wheelchair, in which I sat for the next while.
Emergency was busy, but we were seen almost immediately by a Triage Nurse. There were many infants and youngsters who had higher priority, so we waited an hour and a half, which I didn't mind. Then I was moved into a room within emergency. They ran assorted tests, and I think I was taken to have X-rays of my gut area. The usual IV was connected. After a couple of hours, a doctor appeared. He went through the lab and X-ray results, asked some questions, and decided to admit me.
Fortuitously, a room was available in Ward 4-Y (close by Ward 4-X where I had recuperated after the original colon surgery). The room, 4-Y 14, was bright. I was the only patient in it. There was a nice view of trees. For the moment, I was content to simply relax and let events happen as they might. Maybe I slept. I don't recall.
Later, after suitable tests had been run, the surgeon told me that there was a blockage, and he and his team had decided on a three-fold strategy: to help me survive until the poisons from the chemo had been cleared: to build me up so if surgery was needed I'd have a fighting chance of surviving it; and to try to get the blockage to clear itself so the surgery wouldn't be necessary. And that's what they did.
At first I was content to lie there and give myself up to the circumstances. I couldn't do anything to help myself, and was drowsily happy to surrender the burdens of life and leaving the decisions to others. I mostly listened to my 'Walkman' and slept. But Anne tells me I was still hiccupping a lot, and I seemed angry and unsettled to the point I even threatened to check myself out.
Also, the IV had been very poorly placed: it kept crimping and shutting off, and every time I moved, it kept getting caught in sheets or blankets, or bumping into something, which was painful. After a few days, it was removed and reinstalled properly.
The problem with the anger was: I had no one I could legitimately focus my anger on, so for a while I worked myself up in bitterness focusing on those targets that were available: the oncologist and the cancer clinic being high on the list.
I found that the only one I was hurting was myself, so I decided to cool it. I also worked out that I was in fact angry at the Universe and Circumstance -- “Why Me?” “Why should I be inflicted with this cancer, and all the complications, and it wasn't fair, etc. etc.” “Why didn't 'they' catch 'it' sooner?”
But there's no answer, the Universe has its own concerns, and makes a remote and unlikely target. So I decided to accept that what is, is, that recriminations are pointless and fruitless, that eating myself up serves no useful purpose, and that even specialists are human and as such are far from perfect.
I can understand the need for rage, for lashing out at something, or someone, when fate closes in, but that urge has to be put down, and without delay. Anger is a dangerous luxury; because it always comes with horrendous side-effects which guarantee destruction of all one holds dear – including life itself.
I have no doubt that it was my reactions to the chemotherapy that sent me to hospital more dead than alive. But I doubt that anyone could have predicted that in advance: each person reacts differently. given what did happen, there's no way I'm going back for more. I may, however, want to explore other treatment possibilities – if I can find someone competent who is a good listener and can communicate simply and throughly, who is up-to-date on what's going on in oncology, and who is willing to take the time to spell out the details.
After two weeks or so in hospital, with daily visits from my surgeon and his faithful pack of juniors, I began to ask if surgery wasn't inevitable. But he was still hopeful that the strategy had a good chance of working, and he remained, as always, confidently patient – and that inspired confidence in others, including me.
By this time I had a second IV feeding me what looked like a milkshake; it was an enriched formula intended, for the time being, to replace solid food. I also had a tube up my nose and down my throat which was connected to an intermittent pump which was intended to help draw up and dispose of whatever was in my stomach. It was nasty in taste and seriously irritating to my throat: I developed a vicious cough which made it near impossible to sleep. So all was not wine and roses.
In that hospital's culture, the universal answer to pain and discomfort, is to treat the symptoms with morphine. I was limited to three injections a night, at a minimum two and a half hour intervals. I wasn't in pain as such, but the discomfort from the throat irritation was real, and the morphine – while it's effect lasted -- allowed me to sleep.
My vital signs were closely monitored. Four times a day, night or day, asleep or awake, there were the standard barrage of tests: blood pressure (always low), blood sugar (all over the place), temperature (always normal), blood oxygen (good), etc. And then insulin to 'control' the blood sugar), and heparin to prevent blood clots forming. (Since I was still not taking in solids, they couldn't give me my usual medications in pill form: everything came in by IV or direct injection). And every day or so, blood work.
Early on, they checked for C difficile and other nasties; a useful precaution in light of what has and is happening at too many hospitals in Ontario.
With Anne's help unplugging the power cord to the IV stand and maneuvering it to the other side of the bed, I could, holding on to something, stand up, and walk. I recalled from my recuperation from the original surgery that walking was very helpful. So I walked most days, though not as fast or as far as I wanted.
Then, early in week three, late one night, the blockage cleared. It happened suddenly: it was as if the levees had crumbled, and the city was inundated. Except this was not water.
It took a while to clean the bed, the room, and me. The same thing happened a few hours later, though the quantity wasn't quite as overwhelming. After that, I tried to get myself out of bed, and with the help of my cane, walked over to the bathroom on my own; which was much appreciated by everyone, including me.
I asked if the tube couldn't come out of my throat; they agreed, and that was one less encumbrance. The milkshake IV was disconnected, and actual meals, on the order of soups, cream of wheat and juices appeared. The cough was still there, but that didn't concern the medical team, and on the Saturday we agreed that I might as well go home.
The care I received in hospital mirrored my earlier experience recuperating from colon surgery. Almost without exception, it was professional, compassionate, highly skilled, timely, and successful; thanks to many dedicated individuals. The health care system, as I experienced it, worked as it should.
Home, Expectations, and Insecure Reality
When I got home I weighed 174.5 pounds. I looked like a long-distance runner, though I couldn't have run 10 feet without collapsing. Prior to the colon surgery (Feb 27 2008) I weighed 208, down from my usual 215. After colon surgery I weighed around 200, so I lost 25 pounds during the chemo experience.
The cough picked up in hospital was still very much with me, so I made an appointment with our Family Practice doctor. Lacking indoctrination in the specialist culture, he took the time to listen to the tale of my adventures, and being a person with common-sense, as well as having a belief in evidence-based practice, he sent me immediately for a chest x-ray. Not surprisingly, it showed fluid and a partially collapsed lung, so he put me on an anti-biotic. He also prescribed a cough medicine of undoubted power, but with its own hazards as it contained an opiate, and was potentially constipating. But it allowed me to sleep nights, and as soon as I could I cut back on its use.
Given that the prime focus of the last six months had been a preoccupation with not getting constipated,
I found myself monitoring and timing every fart and visit to the toilet. I admit to a not entirely rational, though not entirely irrational, fear of having to return to hospital (though that would not be the end of the world). The anti-biotic complicated matters because it effectively killed off useful bugs in my digestive system, leaving me variously constipated, or going often. So I intermittently resorted to 'fiber' and then worried about how much or how little to take. Eventually, the lingering effects of the anti-biotic wore off, and thankfully, for now at least, my guts seem to be functioning to a reasonable schedule.
Unreasonably, I had expectations that the surgery, and the end of the blockage, would restore me to perfect health with all systems working normally. I now realize that there is no such thing as 'normal' so I do the best I can given age and life-style, medical history, and on-going conditions – like everyone else.
I have been eating lots of protein and gradually extending the range and variety of what I eat and drink. My weight, after a fast initial gain, was stuck at 180.5 until the effects of the anti-biotic wore off. Then I started to rapidly gain weight and energy, and am up to 190 as of July 7th. I handle stairs easily, and regularly walk a mile or more: at first that wiped me out for the rest of the day, but now its becoming routine. I've come a long way in a short time, though there's still a ways to go.
Part two of a three-part series
[Mar 30 08]
I got the word on the Monday that my surgery was scheduled for the Wednesday at 11.30 a.m. That meant a last meal – my last for the next seven days -- and then another session with the cleaning fluid all day Tuesday; preparatory to checking in and walking the last mile.
On the Wednesday, we went to the hospital and checked in: I packed my clothes away and instead was supplied with a “one-size-doesn't fit anybody” gown, said goodbye, a quiet prayer, and trudged along a length of corridor into the operating theater.
It was much larger than I expected, very brightly lit, with equipment all around the periphery, three massive light fixtures reminiscent of flying-saucers, a half-dozen or so people, and a 'bed' of sorts center-stage. I said hello, got some hellos in return, and was invited to lie down on the bed/platform.
It was 11.45 a.m. Someone came over and gently placed a mask over my nose and mouth. “I'm going to put you to sleep now,” he said. “All right,” I said. And then it was late afternoon and I was somewhere else, and Anne was there with me.
I didn't feel much at that point. Whatever they had hit me with was still active in my system; I felt good, drowsy, and content, for the moment, to just lie there. I gradually discovered IV taps in both wrists, and a catheter – all installed while I was under. When I shut my eyes I hallucinated – so I kept my eyes open.
From time to time, people came in and monitored my condition: blood pressure, temperature, blood oxygen, and electrolytes. Blood sugar was measured using a device left over from before the flood – it was huge: closely resembling the turret on a main line-of-battle tank, and about as cumbersome. The latest versions are tiny, only require a droplet of blood which can be drawn from anywhere comfortable such as an arm, and give a result in five seconds. Whereas this thing from the remote past was vampire-ish in its demand for blood – obtained by slashing at a fingertip. Definitely cruel and unusual punishment.
Then there was a delay while the meter made up its 'mind'. Long enough to read “War and Peace,” watch the entire StarWars series, or take a leisurely stroll to Chicago and back. Finally, a reading emerged, and the nurse then disappeared while she consulted with the resident oracle.
I never did discover the whereabouts or identity of this mysterious being. I came to understand that there was some kind of mysterious shamanic presence, who, being brought the patient's vital signs, consulted zodiacal charts and the entrails of chickens, and issued instructions. In my case, if the blood sugar level was above ten, the nurse reappeared with a needle full of insulin which went into my shoulder. At the same time, another needle of heparin went into my thigh to prevent blood clots.
They were delighted with my blood pressure, which was, to me, way too low – in the 50's and gradually ascending day-by-day into the 60's and low 70's. Everything else held remarkably steady throughout. It seemed I was healthy – for the circumstances.
I discovered I was in a ward dedicated to Gastro-Intestinal cases; mostly recovering from surgery. There seemed to be two beds per room with one toilet shared by two rooms. This may seem a trivial aspect of my brief stay in the ward, but it wasn't. The pivotal events, which determine the timing of everything else, including getting out of there and going home, are farting, and having a bowel movement. This is understandable if you recognize the extent of the surgery.
In my case, as I discovered later, the entire right branch of my colon was gone, along with my appendix and a portion of my small intestine. This took some ingenious re-connecting and re-working of blood supply to what's left of my guts. I have a main incision running vertically four inches or so, and a subsidiary cut of an inch or so to the left plus a small hole below; the subsidiary stuff used perhaps to assist the re-assembly.
There seems to be a rule: don't tell the patient anything unless asked. I might have gone on for years, attributing this or that ache to my appendix; not knowing it had gone to a better place. But I asked, and must now find something else to be a hypochondriac about. The surgical team did an incredible job; for them its routine, but to me its mind-boggling. The cancer must have been large, to necessitate such a long incision.
The GI Team on the ward was superb; deeply experienced, caring, thoroughly professional. They made a difference -- for many patients. I only encountered one exception, and she was a monster; more about that later.
As to caring, and acts of kindness; most everyone on the ward was caring and kind. A couple of examples; I found the 'bed' totally unusable. I tried, but with all its infinite adjustments of angles, whenever I lay there for more than a few minutes, I got totally painful bunched muscles in my neck. Mostly, I sat up in a chair – dozed some, worked Sudoku puzzles, read, listened to music, and took the occasional walk – pushing my IV stand ahead of me. One night, sitting in the quasi-dark, dozing, with my neck in a knot, my night nurse came quietly in and placed a hot blanket around my neck. She had gone to the trouble because she thought it might ease my pain. It did, but the main benefit came from realizing someone cared.
Another time, another nurse came in pushing an IV stand which she switched my assorted devices to. She had recognized that the stand I had been using, and pushing along the corridors on my walks, was as recalcitrant as a shopping cart with a sticky wheel. The new stand was silent and smooth, and much easier to roll along. Another act of gratuitous kindness.
These were sweet and helpful gestures. They say a great deal about the prevailing culture.
Now back to the toilet issue. The one for my room (and the adjacent room) was located on an outside wall. This meant it was as cold as an outdoor privy, though not quite as attractive. Also, with four people fully preoccupied with peeing and otherwise attempting to produce something – for example, my immediate neighbor must have shuffled into the can every half-hour all night and all day (which wearied him and the rest of us), and the good folks in the next room must have had ostomies, because they were duly represented by an orderly, who spent most of his time in said bathroom carefully inspecting beakers of output. As he said of the toilet -- , “This is my office.” So the notion of quietly relaxing on the can, and producing, was not entirely realistic. Yet, eventually, it happened.
In the meanwhile – I felt, and appeared, as though the surgeons, in a perverse moment, had sewn a fully inflated rugby football into my gut. I was distended. It felt as hard as concrete, and it hurt. It hurt non-stop and it hurt considerably.
Enter the pain 'management' specialist. For peculiar and arcane reasons, the powers in the ward are divided. The surgical and recovery team must defer to the pain management specialist, and do so with a grimace reflecting deep irony. So the patient falls between two jurisdictions, with ineptitude holding sway.
One first encounters the pain people soon after one opens one's eyes. Not feeling anything in particular and slowly getting used to the strange concept of still being alive. “On a scale of 1 to 10, how much pain are you feeling?” This became a frequent refrain. “Compared with what?” I asked. “Well, this is how we assess your pain.” I gave up trying to explain that there are different kinds and qualities of pain: continuous pain, intermittent pain, hot pain (such as with Shingles), special pain (as with kidney stones), and so forth. They weren't interested. They didn't listen. They had their scale and that was that.
They extolled the merits of the pain pump which was part of my IV rig. This device dispensed morphine as and when the patient wanted – except the dosage was preset, and the timing between doses was also beyond the patient's control. However, it meant the nurses were no longer responsible for helping patients through pain and that was felt to be a good thing.
As to the usefulness of morphine to control the pain resulting from the surgery and the bloating – I got the pain specialist to admit there was no positive impact. There were however, “side-effects”: the morphine actually increased the bloating and hence increased the pain, while retarding healing. Further, the morphine caused involuntary 'twitches' – if you define 'twitching' as lashing out with arms and legs with enough force to cause serious injury to a patient or an attendant.
Having come to that admission, the pain specialist then recommended Tylenol 3 as a substitute. Tylenol 3 contains codeine and, while it does control pain effectively, it is also highly constipating. If you recall that the big event, the happening, is having a bowel movement to prove one's reconnected bits and pieces of digestive system are working again, you will understand that Tylenol 3 is as counter-productive a recommendation as one could come up with – short of hara-kiri. But that's inevitable when the patient isn't seen as a person.
The next big idea was something called Percocet – another narcotic. But no one could tell me anything about it, and I found that strange. In this modern era, even the smallest pharmacy has as computer system which scans for interactions, and spits out reams of paper describing a drug, what its used for, cautions, side-effects, etc. etc. There is a pharmacy in the lobby of the hospital. Yet here we have drugs brought forth with a total lack of information to go with them; and the patient is expected to make an informed decision. Lacking information, I decided to forgo all further pain medication, and tough it through. (I've been through worse).And this is supposedly the era of evidence-based medicine! Pain Management, as I experienced it, is a cruel farce.
I was told to walk: it helps the healing, and gets the guts churning again. A physio 'specialist' showed up to get me on my feet and walking, but with Anne's help, mostly moral support, I was able to function on my own. The swollen gut hurt seriously, but when I walk, I walk. I'm not used to a slow shuffle, so I strode along at a fair clip, leaning as if into a wind as I pushed my IV stand along. Each time, I went further – another lap, or a longer corridor. Surprisingly, despite many days without solid food, aside from the pain, I felt strong, and without vertigo. So I walked.
The surgical team appeared early every morning on their rounds: they inspected the incision, pressed and probed, asked after progress, and checked vital signs. They were always cheerful, and relentlessly optimistic – a useful and reassuring attitude in the circumstances. I was always glad to see them; fitted out as I was with a fully inflated football and hurting, it made it easier to bear knowing what I was going through was par for the course.
And after my bowels began to churn around and I produced gas and other good stuff, events happened rapidly. I was allowed my diabetes medication (Actos) and my trio of blood-pressure pills, and since I kept those down and the readings continued to look good, my meals changed from diet jello, apple juice, and ersatz soup, to muffin, crackers, cream soups (hot and delicious) – even a hamburger of sorts. I couldn't eat it all. And then my week had gone by and I was ready to be released; but with blizzards raging every second day – it was a bad week for storms – they allowed me to stay an extra day until the weather allowed access. And then I was out of there walking under my own steam, and went home.
About the monster I encountered: you can't tell a monster by how they look – they appear normal and harmless enough. A monster is a monster because it does monstrous things – notably taking advantage of a privileged position in the health care system to deliberately inflict pain and suffering on patients and even colleagues. Sometimes they do much worse. They do these things because they like to. Their colleagues know who they are and what they are doing, but are powerless to intervene; because the monsters enjoy the full protection of their respective unions – professional and otherwise. And the monsters are vicious and vindictive and without conscience.
The incident began when it was time to change an IV tap. It was in a comfortable position on my right arm well above the wrist, but there's a protocol that no IV tap should be left in place more than a few days. My nurse of the day tried to find a place on my left arm. I had asked her to be careful about interfering with my left wrist – I'm naturally left-handed and I needed the strength in my left hand and arm to get myself up and around. She tried to find a suitable vein but wasn't having success. The system dictates that in such circumstances she call in a backup – an 'expert'. Enter the monster.
She was young, seemingly angry at being interrupted from whatever she as doing. I repeated my request to keep my left wrist free so I could lever myself around. Thereupon she placed the IV tap into my wrist, with expertise, in the perfect place to paralyze me with pain if I attempted to move my left wrist in any way whatsoever. Having done her handiwork, she flounced out.
I looked at my nurse, made eye contact, and, speaking in an even voice, gently but firmly, told her this was no good and had to be removed right away. She looked at me for perhaps five seconds, and, recognizing something in my voice and eye, said she would be right back. What she had recognized was that I was not going to back down, come hell or high water I was prepared to make my stand. She was back in a few moments with another nurse – definitely not a monster. She was gentle and skilled. The IV tap came out and then she installed one in a different place on my right arm. She dated it, taped and secured it, and life went on. I thanked her, and my nurse.
I could, at the time, have demanded to see a patients' ombudsman. I could have demanded to see a doctor in charge. I decided to save it, and get on with getting out of there. In the grand weighing of things, the ward and the people running it, were accomplishing daily miracles. New patients were emerging regularly from surgery, each representing a miracle of modern surgery at its best,and each, in a week or thereabouts, as an outcome of the care and compassion of a dedicated team of outstanding individuals, would be on their way home in a state to face their new realities.
Its a shame that one monster diminishes the accomplishment of the team – but that's the reality, and that's all it takes to cheapen and taint what is to me a miracle of healing.
I've been a member of teams in many kinds of settings – industrial, high-tech, low-tech, and institutional, small, large, and world-scale. I've researched them, and been a mentor and consultant to many. I've taught many thousands of would-be managers. I've had the privilege of working directly for and consulting with several remarkably able chief executives – knowing just one of them would have been a great experience.
I know how teams can form themselves and how effective they can be at self-managing – and self-selecting and proving their members. Gaining acceptance by such a team is a high honor. I know what motivates – and what gets in the way. The GI Ward Team, in most respects, is ideally motivated. The team effectiveness is tested by each new patient, and the turnaround is just a few days. Yet each person is unique in some respects, and so the challenge each represents for the team is both similar to every other person they have seen through the recovery phase, but never identical. These are ideal conditions for what is, in every sense, a customizing team. The patient is the goal and that is as it should be.
And then the team on the ward works closely and I believe comfortably with the surgical team. In reality it is all one team and there is powerful respect all round.
I won't label the pain management fiasco as monstrous, though I could. But I'm reminded of Carl Jung's observation – that organizations tend to monstrous behavior, and the larger the bureaucracy, the more monstrous the outcomes can be.
The team, left to itself, would soon enough dispose of any monstrous tendencies. And you can bet that pain would be managed effectively and realistically. What gets in the way is bureaucracy with its artificial divisions into often meaningless jurisdictions. Organization charts seldom reflect reality.
And patients should not be artificially divided to suit organizational boundaries.
Given the way things are, every patient needs a visible champion. Anne was, and is, my champion – and I have others on call in the wings. That helps enormously – no one should have to face 'The System' alone.
Part one of a three-part series
[Mar 19 08]
For many months I was troubled by gas in my gut. It was worse when I was stressed; there's an instantaneous connection between mind and body. I discussed it with my family practice doctor. He suggested something to cut down stomach acid, and that helped -- I had fewer bad days and more good ones.
I also asked him about trying something to reduce anxiety. He gave me two prescriptions for the same thing but in two strengths. I started with the mild dose. After four days I was as alive as a zombie, and had the shakes; not to mention vertigo. I decided the stuff was not for me, so I stopped; it took a few days to wear off – it eventually did, which was a relief; because the effects were so bad that I feared permanent damage. And that was supposed to be the low, innocuous dosage. I should know by now that if side-effects are on offer, I'm usually first in line.
That aside, my doctor suggested checking my plumbing out – top and bottom. If he hadn't. I would have insisted: enough of wondering what was going on – it was time to get the facts! This was back in December. My doctor estimated I'd probably hear from the hospital in March or thereabouts, but lo and behold, I got a call Jan 29th (the day after my birthday). They had a cancellation, so I took it. Quick trip to the pharmacy to get the powder to mix four liters of not-bad tasting stuff and a couple of pills; all to clean out the plumbing so the view from below would be unobstructed. The problem with the four liters is having to drink it in two hours or thereabouts. And not eating for twenty-four hours and more.
My system was cleaned out quite thoroughly, and on the Thursday (January 31st) at 2 p.m. I checked in for my appointment. This involved getting naked, donning a hospital gown (open at the back) and then a hospital gown (open at the front), getting an IV tap attached to the back of my left hand, and then sitting around in a cramped waiting area with a dozen others similarly attired – all of us clutching large garbage bags containing our clothing. As its winter here, and a wicked one, clothing includes heavy boots, jeans, and layer upon layer of parka, sweaters, etc.
After waiting two hours beyond my appointment time, I got to chatting with the man sitting on my right. His appointment was for 1.30 p.m. That's when I figured I might be there a while. At 5.15 p.m. I was called, placed on a bed on wheels, and trundled into an ominous-looking but very clean room replete with bright lights and TV monitors.
First on the menu was the endoscopy. This involves shoving a tube with a TV camera in it down your throat and into your stomach. Beforehand, they spray your throat with an anesthetic so the gagging reflex will be subdued. This doesn't quite work. Then you are turned so you are lying on your left side, and before you can think about it you are attacked. Once the scope was well and truly in, it wasn't too bad, but the first intrusion was not fun at all. The nurse, who was highly efficient – I guess she had to be because the throughput demand for these inspections was high – kept telling me I was doing fine, but at the time that lacked credibility. However, it took just a few moments and then the thing was withdrawn (that goes easily) and it was on to the next stage.
By then any concept of personal dignity had vanished, and it was good to simply be able to take an unobstructed breath. I remember saying: “I hope you'll drug me before anything else.” And as I said it, the nurse injected the contents of two syringes into the IV tap. From then on, while I was quite aware of what was going on, and occasionally it was uncomfortable – even painful – I was content to let it happen.
The colonoscopy experience is unparalleled – modern technology allows you to watch the evolving perspective on TV from the vantage point of your own rear end – an experience usually available only to contortionists and yoga experts.
Having nothing better to do at the time, I decided to watch the big screen. It was like the view from an open train car traveling at speed through a very long ribbed tunnel which curved in the distance. And yes, the four-liters of cleaning fluid had done their work and the tunnel was spotlessly clean.
It all moved along routinely, except at a couple of points the person directing activities at the rear pumped some gas in to keep the tunnel expanded. And at the same time, to keep the stomach muscles from expanding, the nurse pressed firmly on said gut area. That hurt, but being suitably drugged I couldn't get too outraged at that, or at anything. Then, when the camera was well along, someone to my rear took the analogy of a plumbing snake seriously, and to keep the train moving, as I experienced it, hammered away at the back end of the train. That was a bit unexpected.
Then, close to the end of the trip, the view ahead became colorful. The doctor, who might be an expat brit by his accent, said: “Hullo. Now that looks interesting!” So they took some close looks, and I couldn't be sure what I was seeing except I assumed (correctly) that it wasn't something that should have been there. As I recollect, it was fleshy and had liver-red blotches here and there. And it seemed to be the target of the biopsy probing. The nurse came over with a long thin red cable-like thing, and almost immediately I could see it on the TV. They were taking some samples of whatever it was, which the nurse placed neatly on slides on a table below the TV screen I was watching. After four or so samples she asked “Is that enough?” And the doctor said: “Get one more,” and so she did. Then the train backed rapidly out.
Then the doctor came around, face to face as it were, which must be unusual for someone in his line of work, and I said: “You found something.” And he said “Yes. Its a cancer. Fortunately its a slow-growing type.” I said” Okay.” Whatever they had drugged me with, if he had told me a meteorite was about to destroy the world I would have blandly said: “Okay.” I asked him: “How long has it been growing there?” He laughed, and said: “Likely, for years.” And he added, “At your age things tend to grow slowly.”
He said, “I want to see you again next Thursday, and I hope to have a surgeon with us. By then we should have the biopsy results. And, I want to set up a CT scan as soon as possible so we'll have that too by Thursday. That will help us locate this nasty precisely.” I thanked him and the nurse and the resident (with the beard). The doctor smiled and said: “You know, tomorrow you won't remember much if anything of what I just told you.” “You are kidding,” I said. “No,” he said. “One of the drugs you were given has that effect.”
I did however remember considerable detail, so this might have been one instance in which I wasn't side-effected. But to give him his due, while I know what I do remember, of course I don't, by definition, know what I've forgotten.
They started to wheel me out, and then I said: “My glasses?” The resident handed them to me, and I rolled from the room to the recovery area where Anne joined me and after twenty minutes or so I got dressed. I asked the orderly about the doctor's amnesia comment. He said: “Yes, one of the drugs does have that effect on short-term memory.”
We got to the bitterly cold underground parking, eventually retrieved the car, and drove home – all of six blocks. It would have been much easier to walk. I had to wait a couple of hours before eating anything, and kept it to something light. I couldn't drink anything alcoholic for another twenty-four hours but have made up for that since.
We met with the GI doctor the following Thursday. He told us that we had caught my cancer in time and the prognosis was excellent. Since then, others have told me this is one of the the easiest and most favorable kind of cancer to deal with -- if caught soon enough. I have no reason to doubt their opinion.
Even so -- Samuel Johnson remarked that the knowledge that one is, in just a few days, going to be hanged, sharpens the mind wonderfully. This kind of event does re-shape priorities.
Oh yes, the title of this screed -- “A Problem with Personal Grammar” -- my colon needs to be altered to a semi-colon; presumably by a grammatical surgeon.
I've had my tonsils out at age 3, a replacement lens put in my right eye 72 years later, and I still have my appendix. I have lost a few teeth here and there. Not bad -- So far.
A week later I went through another colonoscopy: by now I am a veteran. This time the surgeon ran the show, getting a first-hand look. He also snipped out a polyp, which proved benign. The surgeon couldn't confirm a date and time for the main event. In our system of rationed access to health care, there's a problem finding money in the local budget to “buy” operating theater time. The surgeon and his team are available and the operating theaters sit empty much of the time, and I have nothing better to do; so its a matter of allocation of cash from someone's budget.
Over the next weekend, we were in Ottawa where I delivered a very well received presentation to the annual conference of the National Council on Ethics in Human Research. We met many remarkably gifted people from a variety of career backgrounds, and attended some fascinating sessions. The issues are far more relevant and complicated than I had initially thought: material enough for many articles, some science-fiction plots, and perhaps a new career stage. It was nice to be invited, and, for a while, it diverted our thoughts away from the surgery -- and that was useful and welcome.
The day after we returned home from the conference (bitter cold and icy) we met with the surgeon, and then I went through pre-op sessions in which I was probed, inspected, and quizzed at length: blood-pressure, blood-work, ecg, interview at length with an internist, ditto with an anesthetist, and chest X-rayed from various angles. It seems I'm a prime low-risk candidate to survive the surgery.
The intent is to use laparascopic surgery. (I don't know how the word is spelled). Practically, it means a very small incision and recent technology, making it much easier to heal. Even so, it does involve considerable cutting, fitting, and stapling. As well, though everything indicates the cancer hasn't spread, they will snip samples here and there for subsequent microscopic inspection – to see if any individual cancer cells lurk. Nominally, three hours are requested for the actual surgery with an hour or two to come out of it. Then perhaps a week in hospital and then home.
We awaited the phone-call telling me to get packed and prepared. Meanwhile I tried to get my files in order. The surgery might happen in a few days or a few weeks: there was no way of knowing – the “System” has its own insular logic. Then the situation clarified with a phone-call on the Monday: “You're booked for Wednesday Feb 27th at 1.30 a.m.”
[Jan 8 2008]
This is an exploration into the forces and values which guide First Responders of all kinds everywhere.
If I had gone at it the usual way, I might have surveyed the populaces First Responders serve. Or I might have analyzed articles on First Response to produce lists of descriptive words and their frequencies. But instead of being scientific and rational and following an approved research methodology, I decided to follow my intuition.
Of course, intuitive ventures leave you with an assortment of cryptic phrases and imagery, which then have to be dressed up in words and arranged according to headings – and that is a subjective process, so my own background has something to do with the result.
Finding a title was challenging, because it raises the question: “What's this going to be used for?” It might be a useful article for would-be first responders to read, and ask questions around. Then someone could fill in some of the blanks with stories from her personal experience.
It might also serve as a starting point for those sufficiently interested to take issue with and add to – helping to gradually accumulate a “First Responder Manual or Book of Front-Line Wisdom” – “Aphorisms from the Field.” You will encounter quite a few aphorisms in what follows: an aphorism is a powerful one-liner which rings true across time, distance, and circumstance.
The Nature of the Work
First Responders never know exactly what they will have to deal with next, or when, or where. They have to become expert at dealing with the unexpected. They are always led by the situation, however, they can and do learn to be prepared – to be ready to take on whatever comes. It needs a “Job Shop” mentality, and an assortment of general-purpose skills and tools.
Provide for what is needed to meet the Future -- Accumulate Strength through Foresight. That is your best insurance.
Most calls are routine, in the sense that experience and commonsense help to minimize the risks. But exceptions happen, and then precipitate rushing into danger -- Heroics without consideration -- can endanger and sometimes kill; you and others. Heroism should be a last resort. So Patience becomes a strength.
Whatever situation you are called to is sure to involve danger for someone. So don't give in to confusion: be firm in finding out what the situation really is, to the extent you can, and don't jump in blindly. Seek verification, and document the evidence. Trying to enforce your will on the situation means ignoring the emerging reality – and reality does and will emerge.
Hippocrates said, in his most famous Aphorism -- “Judgment is difficult.” Judgment has to be informed by experience and by the facts. Informed judgment equates with Situationally-Relevant Wisdom – and that amounts to Know-how. Judgment can't be taught, though it can be exercised.
If every situation was clearcut and only needed a yes-no answer, there wouldn't be any need for judgment. But nearly all real-life situations involve trade-offs, and sometimes there are no good answers – only combinations of more or less good and more or less bad. However you decide, someone will inevitably suffer – and you, if you have any feelings, will also suffer, inevitably. You too are mortal and stress is real. Your colleagues and advisors can help you deal with it: don't try to stand alone: you are a member of a team and the team is there for you, as you are for the others.
Deal with multiple demands and competing claims resolutely and intelligently. Use your informed judgment to assign resources and energies -- as in Triage situations. Follow the rules, and your values, and don't be afraid to talk it out with colleagues – but remember that coming to judgment is not the same as taking a poll. Advice and consensus are simply more elements to consider. Facts alone will not give you an absolute answer where there are no absolute answers.
It isn't enough to rely on your enthusiasm to carry you through. Enthusiasm creates opportunities for both Greatness and Illusion. Judge carefully.
Don't judge anyone unless you understand the special circumstances surrounding the individuals and the action. There are always special circumstances. Treat each and every person as someone special – as a unique being caught up in a possibly unique situation.
Confront whatever is causing Suffering
Some may regard suffering as noble – even pious; perhaps its in the human makeup to seek virtue in the most grim experiences – when we are the ones afflicted. But it is not noble, pious, or virtuous, to ignore and pass by the suffering of others. Suffering is evil and there must be no compromise when facing it.
It is the first responsibility of a First Responder to look out for and attend to sufferers. Service is about easing the path.
'The way to exorcise suffering is to make energetic progress in the good'. The 'good' isn't always easy to define. But a sure sign, and a useful measurement, is the observation of re-awakened life.
There is a great mystery underlying the struggle, which, for humankind, is without limit and end. The struggle has its dangers, not least becoming entangled in our own hatreds and passions -- passion and reason cannot exist side by side. Know thyself, and be on guard: we are each our own worst enemy. Self-Knowledge (Inner Perception) allows inner concentration on outward events: essential when you have to confront and subdue Outer Danger.
You may not receive heartfelt thanks for what you do. Sometimes you will be blamed, because people suffering pain and loss need to blame someone. It goes with the territory and only time can redress the injustice. Learn to accept the hurt with the good things, and don't be too hard on yourself.
If you can give support and show compassion beyond the minimum the situation seems to call for, you and your colleagues will long be remembered with gratitude, and you will build reservoirs of credibility and affection for you and others to draw upon; and you will know that what you are doing is worthy and significant
Desire for Independence and the need for Role
We all want our independence, our freedom to do our thing unhampered by the restrictions of authority and the rules, regulations, and protocols imposed on us, and that we impose on ourselves by our choice of profession, training, and service. At the same time, we need others.
Most important, and most irritating, we have no choice but to fit in with the formal structure of society; otherwise we have no place to fulfill our calling. We are forced by our calling to train, to meet standards, to accept credentials, to follow the rules.
We must fit into the on-going structure of assignments, of peers and supervisors, of mentors and teachers – and of how they choose to judge us. Peer acceptance, in particular, is the biggest hurdle, and, the greatest reward. There is nothing quite like winning acceptance as a member of a team.
While structure, status, and rules do get in the way, they sometimes are a blessing --- if you have the courage to think for yourself, and have earned enough authority to follow your hunches.
Hippocrates states that 'Experiment is Perilous' – its usually safer for the provider as well as the patient to go with what 'we' know works because we've seen it work often enough. Be wary of applying untested 'remedies': because life and well-being are precious and must not be put at risk unduly. The modern expression is “Evidence-based.” Note that 'Evidence-based' is not the same as “Conventional Wisdom,” which is seldom wise and lacks factual support.
But what has worked time and again, and for many, may not work for a particular individual – or the situation has already deteriorated too far. Sometimes you may have to judge whether or not to push the limits. Hippocrates said: “Desperate situations may demand desperate answers.”
It takes rare courage to decide, and if you go ahead with a last resort attempt, it may not work; and then the patient is dead, or worse, and you are in deep trouble because you departed from the accepted norms. This is why many breakthroughs happen on the battlefield and during pandemics and other disasters – because the usual standards do not apply.
We learn and we try. Life goes on and lives go by, and there's always more to learn and to try. As Hippocrates said: “Life is short, and the Art long.”
Have the courage of conscience to say “No” to orders which are poorly thought through, unnecessarily hazardous, or cruel and humiliating to the sufferer or to their families, or to your colleagues. Challenge the tradition and the 'received wisdom' when it clearly flies in the face of the evidence. Shun the monsters in the system. Report such events and individuals, and errors and omissions, without fear or favor. You owe it to your colleagues and to the people you serve, and ultimately you have to answer to and live with yourself.
Being true to yourself and to your calling has its challenges.
First Responders are never alone, though it may sometimes seem to be a lonely existence. However, relationships are the central fact; as exemplified in the team interplays, the provider-patient relationship, and the learning, mentoring, and teaching.
Relationships depend on a capacity to allow feelings into the open, and then fulfillment, joy, and love – in the best sense – happen. Everything alive has feelings, including feelings for others; though humans can develop blocks against showing it -- Blocking is one defense against emotional overload, but it comes at a high cost. Personal Growth, like Caring, is impossible without Understanding and Compassion.
The best defense is to recognize that the emotional burden can at times become overwhelming: when it seems everything in our life is coming apart. This means accepting that each of us has finite limits, and needs help. We seem to be getting better at doing that: it is no longer shameful to admit to being human and mortal. Problems sometimes are not of the outer world, and only loom large in your mind. Talking it through can help you regain perspective.
Don't take it out on yourself, or on your significant others who only want to help you, and for all the right reasons. And music has its own soothing power.
Your work can bring you a sense of self-worth which is a wonderful asset when derived from knowing you are on your own special personal path, and that your path is worthy.
Find your on-going process of being as you go through life: your life is your very own significant enterprise. Seek to learn, discover, and understand whatever you think will help make you what you believe you are meant to be -- to the extent one can in one lifetime.
Don't become impatient: learn as you go, and don't be afraid to change your situation when you think you should. Everything comes in its own time (Ecclesiastes).
Making It So -- Act with Purposeful Consistency
Join in the Stream of Life with a worthy goal or purpose. Then you can act with dedication and devotion, without doubt or fear, in continuous support of your mission.
Your words should be supportive, positive, consistent, and truthful. It only takes one person of inferior character to frustrate and put down many others. Build teams carefully, and trust peer selection.
Bring your earned credentials and authority to each situation, tempered always by understanding and compassion.
Be a center of stability for yourself and others as things happen; be supple, yet solid in what counts.
Time is alive, dynamic, and has many aspects: we live according to Cyclical Time -- The Seasons and the Life-Cycle; we all seek The 'Right' Time; we try to live in accordance with 'The Times'; we sometimes desperately want our 'Set-aside' Time for contemplation and inner discovery. And on some level, we 'know' we are part of 'All-Encompassing Time' -- the on-going Process of The Cosmos.
We also speak of 'Moments out of Time', markers with potential for greatness or doom -- when all creation stops for an instant -- the birth of a new life, the collapse of a hope -- a time to live and a time to die. There are even those rare, sacred, instants when time itself is transcended, allowing us an intimation of Creator.
All of these aspects and qualities enter into the lives and works of everyone, and of First Responders in particular. First Responders know from first-hand experience that the Cosmos has dimensions beyond what we can measure and understand – they have been 'touched' by it, though they may prefer to not talk about it -- because its impossible to communicate the experience to someone who hasn't 'been there': other than to acknowledge that 'It' does happen.
As you Grow, the Values you live will influence the world around you. Recognize and accept you are an exemplar – let your light shine, illuminating your path, and serving as a beacon for others.
You have the potential to impact many lives – for good or for ill. Live appropriately.
NOTE: Substantially the same article appeared in “First Response,” the print journal of the Volunteer Ambulance Officers Association of Tasmania Vol 12 #2 November 2007.
[Sep 30 07]
[Sep 10 07]
Today's hospitals have taken
precautions to prevent the entry and the spread of infections. One
hospital has announced it will screen all patients for resistant
bacteria and viruses as part of its admissions process. Any carriers
will be suitably quarantined.
[Aug 27 07]
No More Waiting?
Yes, it is incredible and it's not just in Ontario: it's the same for all the provinces. No one has a clue because no one has ever audited the healthcare system and no one has ever brought together the numbers to allow a determination of such trivialities as efficiency, effectiveness, quality of services, consistency, and reliability.
What is known: healthcare in Canada costs $80 billion a year. That's a trillion dollars since 1992 and in real terms that adds up to a whole lot of cash. What isn't known: is that money usefully spent? Could the job be done for less, and could it be done better? Is there value for money? The healthcare administrators don't know. The unions - professional and otherwise - don't care. The patients are happy just to survive.
Back when SARS threatened Toronto, the Ontario government of the day introduced strict quarantine measures reminiscent of the often drastic quarantine laws applied in times of plague [as in London 1664-65].
Quarantines are difficult to enforce, but the quarantine worked for Toronto and SARS was contained. But, as can happen when something new attacks in epidemic proportions, people died and some of them were healthcare workers.
They died in part because we didn't know enough -- we never do -- and in part because people wore the wrong masks, or they weren't properly fitted, and because the hospital culture took a while to get over an under-estimation of the dangers. We will be ready for SARS next time, but next time it won't be SARS, and there will be casualties.
One outcome of the re-hash of the SARS experience is a call for danger pay -- looking ahead to an anticipated pandemic. Undoubtedly healthcare workers will face risks and uncertainties; some will be casualties and some will die. It's not enough to say that it goes with the territory and the Hippocratic Oath -- I'm not sure it does when it comes to the crunch.
In the exceptionally virulent plague outbreak in London [1664-65], many of the best doctors and nurses died in the first weeks, as they worked valiantly and desperately to help the sufferers. This was not the dark ages; London was a capitol of enlightenment, home to many men and women of science and medicine. But when the plague came, in a particularly horrific form, they didn't know enough. Regardless of how advanced we think we are today, the same truth holds -- we never know enough, and too often, the best among us die trying to stem the tide.
Danger pay or compensation or insurance may well be justified. But think about it: pandemic is just one form of disaster affecting the many, and the response to disaster involves the many. There are many unsung heroes. There are many who suffer, and too many who die. Pandemics, like disasters in general, do not differentiate between the professionals and the rest of us. Doctors and nurses, and orderlies, and many other healthcare workers, are on the firing line. But so too are the paramedics, firefighter first responders and a host of others including volunteers. And then there are the collectors of the dead, and the ones who dig the pits and dispose of the corpses. How about the folks trying to maintain law and order while the world around panics and goes ballistic? And finally, there is the largest category of them all: you, me, and everyone else; the patients and the potential victims. We are all in it together, so where does danger 'pay' begin and end, and with whom?
A few callous souls have argued that if 'we' don't get danger pay 'we' will simply down tools and refuse to show up at work; the 'we' variously referring to doctors and other healthcare workers. It's an interesting argument. Fortunately, there is a precedent --
A few years ago, emergency room doctors in Winnipeg walked out. They claimed, likely justifiably, that they were overloaded, the system was breaking down, and no one cared. So they downed tools and the entire emergency system shut down. I think the walkout lasted for two weeks or thereabouts. The mortality rate in Winnipeg dropped alarmingly; of the order of 30 percent. In due course, the emergency people returned to work.
But one seems to have absorbed the underlying issue: if there were no healthcare system, would we be worse off or better off? What would happen if all the patients downed tools and walked out? How would the politicians cope with a pandemic of angry voters? Let them try to quarantine that!
Remember Bob: "You have the power." So vote as you like, but vote often.
[Posted Jul 15 07]
Last Friday evening, well past
sundown, we heard a pounding at our back door. It got louder. I went
to investigate; a young man was busily trying to wrench the screen
door open so he could attack the main door. He succeeded in damaging
the locking mechanism and twisting the door out of shape. Then he
hammered at the back door proper, trying to break in. I was not
amused. I unlocked the door and asked him in non-genteel terms, what
he thought he was doing. He stepped back with an idiot smile on his
face and waved a handful of light bulbs at me. At my added
suggestion that he take off rapidly, he did.
Ethics and Triage: A Nasty Scenario [Posted
17:40 Dec 12 06]--If only the rich could pay the poor to die instead
of them, Then the poor would make a very good living. (Ancient
Pandemic Flu Planning: "A Flow is a Quantification of Assumptions" [Dec 6 06]--References. I have made use of three references: 1] Government of Ontario Flu Pandemic Plan, Chapter 17 Acute Care Services & 17a: Tools; 2] Shoppers Drug Mart Healthwatch Pamphlet: Flu; and 3] Government of Ontario Pamphlet, “What you should know about a flu pandemic.” April 2006.
My own comments are enclosed in brackets [like so].
Flu and Pandemic Flu Facts
Flu is caused by influenza A and B viruses.
It is spread mainly by virus in the air.
It finds a comfortable home in your airways.
It starts to be contagious 1 day before you first experience symptoms and remains contagious for at least 5 days after symptoms start.
Flu can lead to serious complications: pneumonia, bronchitis, sinus infections, ear infections, dehydration, and in very serious situations, death.
Ordinary flu happens every year: usually from November to April – and then stops.
Pandemic flu usually comes in two or three waves several months apart. Each wave lasts 2 -3 months.
5%-20% of the population may get the flu in any given year.
A yearly flu shot reduces risk of catching flu by 70-90%.
A pandemic is distinguished by its scope: it is a worldwide epidemic.
A pandemic flu strain often develops when an animal or bird virus mixes with a human virus to form a new virus. Because people have little or no immunity, the disease can spread faster than with an ordinary flu.
The symptoms are the same as with an ordinary flu but can be much more severe.
There were three flu pandemics in the 20th century: the most deadly, the “Spanish Flu” in 1918-19 killed 20,000,000.The death rate was highest among healthy adults in their 20’s and 30’s. [The Median Age of Ontarians is 37].
A flu pandemic could happen any time.
We can’t predict just how society will be affected until we learn how strong the virus is.
There is no existing vaccine for pandemic flu. It will take 4-5 months after the start of the pandemic to develop a vaccine.
Drugs used to treat ordinary flu may also help people with pandemic flu but we may not have a large enough supply, and we won’t know how effective they are until the virus is identified.
[“A ‘FLOW’ IS A QUANTIFICATION OF ASSUMPTIONS”]
Based on CDC’s U.S. FluSurge Forecasting model and an assumed 35% Influenza Attack Rate --
Over an eight week pandemic: [there might be 3 such waves in a pandemic year]
Peak admissions/day: 1814
If you live in Ontario: during the first wave --
You have 1 chance in 3 of catching the pandemic flu
If you catch it, you have 1 chance in 2 of needing to visit your family doctor
and 1 chance in 70 of needing to be hospitalized
If you need to be hospitalized, you have 1 chance in 5 of dying there.
An unknown proportion of the population will develop health complications.
These levels are at least six times greater than typical hospitalizations for influenza and pneumonia during inter-pandemic periods.
[If you don’t get the pandemic flu in the first wave, your odds improve greatly:
*improved natural immunity from the 1st wave experience
*probable availability of a pandemic flu vaccine
*much better understanding of how to deal with the virus]
Resources needed by Hospitalized Influenza Patients:
100% using an acute bed for 5 days
15% using ICU beds for 10 days
7.5% using ventilator support for 10 days
If the Assumptions hold:
At the peak of the pandemic, influenza patients will use:
52% of all Acute Care Beds
170% of ICU Beds
117% of Ventilator-supported Beds
Current Demand for hospital services is already high: ICU Beds are utilized 90% daily.
The FluSurge model does not take into account Health Care Worker absenteeism but the Plan assumes that staff will contract influenza at the same rate as the general population in their communities. [History suggests staff will come down with pandemic flu at a much higher rate, and fatalities will be disproportionately high -- especially in the first weeks. If so, the net effect will be to seriously reduce availability of trained staff as the pandemic goes on: the impact will be particularly grave should a second wave and then a third wave hit]
[The Model does not consider how patients will be moved to and from hospitals: Ontario is a big province with a population of 12 million (5 million households). However, Ontario is 80% urban, and most live in the so-called “Golden Horseshoe – from Oshawa to Niagara, including the Greater Toronto Region].
DEVELOPING HOSPITAL SURGE CAPACITY
There has to be a Phased Approach:
*Deferring non-influenza care
*Dynamic use of influenza Triage
*Dynamic Use of Admission/Discharge Criteria
These will vary according to available and needed local hospital resources.
*Defer Services for Non-Life-Threatening patients.
*Discharge ALC (Alternative Level of Care) patients to Long-Term Care.
*Discharge acute patients and inpatients to home care.
*Create “flex-beds” from reserved or recently closed beds.
*Deploy freed-up beds for influenza patients.
*Use Ventilator Capacity anywhere sufficient oxygen is available:
ER, post-anesthetic care units.
*Cohort infectious and non-infectious patients.
*Defer holidays and leaves of absence.
*Establish 12 hour shifts.
*Train non-clinical staff to handle support services: meals, personal care, patient movement, cleaning, etc. and support for health care workers and families (child care, pet care, etc)
*Coordinate with other hospitals.
*Encourage participation of public in Home Health Care courses before the pandemic.
*Cross-train clinical staff.
[Wait until the Pandemic strikes. Then count backward 1 year, and initiate training].
MASS EMERGENCY CARE DECLARATION
AND CRITICAL CARE TRIAGE
With the assumed 35% Attack Rate the phased development of Surge Capacity will not be enough to meet the Peak Demand. Accordingly, a Mass Emergency Care condition will have to be declared: this will have “substantial legal, regulatory, and logistical implications.”
The type of Triage contemplated is only justifiable in an Overwhelming Crisis i.e. when all resources are in danger of being exhausted.
*All patients will be cared for – one way or another. [True, but not very comforting.]
*Triage is a practical application of Ethics [Everything is.]
*Fairness and Justice will prevail. [How about Compassion?]
*Based on Clear and Transparent Criteria.
Timely Accurate Information is vital
Health Care providers will need real-time data about patient outcomes during a disaster; in order to modify criteria and prevent over- or under-triage. The Protocol will evolve with time and use.
No Triage systems have been developed yet for use in critical care or medical illnesses but there are models available to draw on:
Illness Severity Scoring Systems: “cumbersome and impractical during a disaster when human resources are scarce.”
Military Triage Systems: “devised specifically for Trauma and not for medical conditions or biological events.”
SEIRV Triage System: “developed for use in Bio-Terrorism attacks.”
Categorizes patients but does not address Resource Allocation.
Uses ‘Inclusion’, ‘Exclusion’, and ‘Minimum Qualifications for Survival (MQS)’, to guide triage decisions – “which should be part of all Critical Care Triage Systems.”
Sequential Organ Failure Assessment Score (SOFA): “may be useful as a component of a Triage System.” It uses general physiologic parameters applicable in a wide variety of conditions.
Identifies patients who may benefit from admission to critical care: focusing primarily on respiratory failure.
Identifies those needing a level of resources which cannot be met in a pandemic, and even if ICU resources were found they would have a very poor chance of survival (SOFA Score of > 11 i.e. mortality rate of > 90% even with full critical care). For example --
*Cardiac Arrest not responding to prompt defibrillation or cardiac pacing .
*Needing large blood transfusions
*Underlying “significant and advanced” illnesses with poor prognosis and high short-term mortality (as in advanced cancer and end-stage organ failure)
MQS -- Minimum Qualifications for Survival
*Place a ceiling on the amount of resources that will be allocated to any one individual.
*Early identification of patients who are not improving and are likely to have a poor outcome.
In other words -- find a ‘balance’ between those who are sick enough to need the resource and will do poorly if they don’t get it, but are not so sick that they are unlikely to recover even if they do receive intensive care. In other words, every patient who is admitted to critical care should survive. [And those not admitted will surely die? Self-fulfilling prophecy.]
OPERATIONALIZING CRITICAL CARE TRIAGE
“Effective Triage depends on an established, skilled, and practiced infrastructure.”
CENTRAL TRIAGE COMMITTEE
This is a Multi-disciplinary Team:
*Making clear and transparent decisions with support from ethical and legal experts.
*Using consistent Criteria flexible enough to allow local responses.
*Primarily responsible for:
-- Modifying the Protocol as the pandemic evolves – based on analysis of
[as it happens] data
-- Command and Control over the critical care resources in the field.
-- The key decision – when to activate the Protocol.
“These issues are too important to be decided by the individual Triage Officers in the field.”
“The best triage decisions are made by senior physicians with training in triage and significant clinical experience.”
They must be given proper training beforehand, as well as on-going support during a pandemic.
The quality of decisions by the Committee and by Triage Officers depends on the availability of accurate [up-to-date and sufficient] information. There has to be a reliable two-way Communications Network between the Field and the Committee.
[Given the current lack of effective communications and a near-total absence of reporting of system-critical information in all aspects of health care, it’s hard to believe that the Plan – which results from considerable research, intellect, and experience – will work as stated: but it is a very good start.]
On Tuesday, November 21, 2006, The Hamilton Spectator headline read:
“No pandemic care for elderly” as the page 1 lead-in to an article by Joanna Frketich.On page 8 of the same issue, an article by Peter Van Harten was headed”
“Pandemic rules hard to swallow?” with the sub-head“MD predicts major ethical debate.”
I’m amazed there weren’t more such headlines, but it takes a certain amount of effort to locate and then read such things as pandemic plans, and supreme court decisions.
Does one have to be able to read as a criterion for attending journalism school? Evidently the Spectator people can, and do. I wonder about some of the others.
The debate over ethics will surely take place – if not before the pandemic, then after. As with all disasters -- natural and non-natural – the political propensity to re-hash will once again raise its very ugly head.
One element (among many) in the Draft Triage Protocol Exclusion from Admission criteria set is Age > 85. So Seniors might be well advised to hide their birth certificates and lie about their age.
Triage is never easy. If a pandemic comes upon us the hard choices could become very hard. “Tennis anyone?”Be well.
Shingles [Jul 1
06]--I have shingles: an evidence-based statement. By inference,
many years ago I had chicken-pox.
Wait Times - The Made-In-Ontario Solution [May 13 06]--We Start from Where and What we Are
Dr. Alan Hudson, “Lead of Ontario's Wait Time Strategy,” in a March 16, 2006 release, summed up the situation, and the intent:
"It’s an access problem –" "…The best medical procedure in the world isn't good enough if it isn't delivered in time."
“There's no quick and easy solution. We're fighting a backlog that grew steadily through the 1990s as healthcare cutbacks took their toll on hospital operating rooms. An ageing population that requires more and more health services is increasing that pressure.”
“Incredibly, there has never been a system for managing wait times in this province. ….. because nobody was collecting and assessing the data that would have painted an accurate picture of wait times across the province.” “We are having to build a system from scratch.”
What’s being Done
Ontario has allocated funding to hospitals specifically to increase the number of surgeries and procedures in five areas (agreed to by all the provinces): cancer surgery, cardiac procedures, cataract surgery, hip and knee replacement, and MRI and CT exams.
To qualify for this extra funding, hospitals have agreed to collect and send the province data on wait times and ‘quality’ for all their cases in the five key areas.
Ontario has established a web site which will present the most recent data on wait times broken out by individual hospitals across Ontario. The database should be operational by December 2006, covering 50 hospitals representing 80% of the volume in the five key areas. Eventually, this registry will cover all surgical procedures in Ontario.
“The data, supplied and verified by individual hospitals, is submitted electronically directly to the Wait Times Information Office, or Cancer Care Ontario or the Cardiac Care Network and is compiled by the Wait Times Information Office.”
“There are significant challenges in compiling and ensuring the precision of this data.”
No identifying information is provided to the Wait Times Information Office, about the patient or the physician. Each record does include a unique encoded identifier that the hospital can refer to if there is a data quality problem or transcription error, but the Wait Times Information Office does not have access to this information.
Other challenges remain: setting wait time ‘targets’; prioritizing patients on the basis of ‘need’; and identifying ‘best practices’ for increasing system throughput.
Eventually, integration of care will be extended across a region under a “Local Health Integration Network” umbrella. [“Integration” presumably means matching patients to services on the basis of access to delivery – within a “region” and even beyond according to urgency.]
Wait List Defined
“A wait list allows doctors to prioritize their patients by the urgency of the treatment they need.” [An operational definition and a peculiar one: rather than “allows,” think in terms of “arises from.”]
“For surgical procedures, Ontario measures the wait time from when a patient and surgeon decide to proceed with surgery, until when the actual procedure is completed.”
“For diagnostic scans (MRI and CT), Ontario measures the wait time from when a diagnostic scan is ordered until when the actual exam is completed.”
“We measure the time you wait from when the procedure is formally booked in the hospital, until it is actually carried out.” [A workable approach, but it ignores the sometimes inordinate delays a sufferer must endure trying to get to another specialist for a second opinion – let alone the waiting to see the initial specialist. Still, one has to start somewhere and work to the art of the feasible.] “You may experience several separate wait times from when you first notice a health problem until your treatment is completed.”
“Anyone needing surgery or treatment that is not an emergency will be placed on a wait list. A patient needing emergency surgery is treated as quickly as possible and does not go on a wait list.” However: “Currently, there is not a consistent method for doctors or hospitals to prioritize their patients, nor is there much coordination to make sure that patients who need care the most get the fastest treatment.”
Various Ontario reports outline the complexities of the challenge – “The length of time a patient waits can be influenced by a number of factors” and these factors may vary with changing circumstances and conditions – unique to each hospital, each specialist, and each patient. Standard definitions and measurements which apply to all and which permit comparisons between hospitals, regions, and provinces are at best elusive. For example, each of the five key areas (Cancer Surgery, Cardiac, Hip and Knee Joint Replacement, Cataract Surgery, and Diagnostic Scans) has its own characteristic difficulties.
“What’s being measured is the interval from "decision to treat" to "treatment." But it may not be easy to fix an exact point in time as when the “Decision to Treat” occurred. The process of negotiation and fact-finding involving patient, specialist(s), family, friends, etc. is complicated and to an extent indeterminate. It likely comes down to a matter of judgment.
The wait time information system uses methods of data collection and analysis which differs from those used in the “ICES Access to Care” report and in the “CCO Cancer System Quality Index.” Different hospitals are included, different procedures (e.g., for cancer) are included or excluded, and different numbers of procedures are included.
“There is work underway to develop standard definitions for wait times across the country, but caution should be exercised when comparing data between provinces.”
WAIT TIME TARGETS
Ontario has developed, with the help of “clinical experts.” wait time targets for the “optimal” length of time within which a patient should be treated. They include urgency classifications and will eventually be incorporated in Ontario’s “Wait Times Information System.” [“Optimality” is very much in the eye of the beholder. Shouldn’t “patients” have a say in what is for them, after all, a life-defining pivotal event? To coin a phrase:
Your Optimal is my Pessimal.” (If there isn’t such a word, there should be).]
Have a great week. Be well.
They are not served who
only stand and wait [Apr 28 06]--Foreword. The Supreme Court of
Canada decision of June 09 2005 rocked the foundations of health care in
Canada. The decision offers a remarkable window on the roles of courts and
legislatures, the charters of rights and freedoms, the evidence and the
facts and the differing points of view brought to them, the health acts,
fundamental justice and the burden of proof, and much more.
Progress is a two-edged sword [Apr 10 06]--Introduction
DAVID A.H. NEWMAN
I write about the state of the world: the Kyoto discord; terrorism;
bio-attack; corporate betrayals; health care; political incapacity (seems to
be a permanent condition); anticipating and handling natural and unnatural
disasters; the human condition and spiritual issues; social and
technological change; history; myth (including various forms of political
‘correctness’); and futures. I explore the inner and outer realities and the
illusions which together shape the human experience.
Previously on David Newman:
Healthcare facilities and indigenous infections [Sep 10 07]
Wait Times and Danger Pay [Aug 27 07]
Of social engineering and partisan politics [Jul 15 07]
Ethics and Triage: A Nasty Scenario [Posted 17:40 Dec 12 06]
Shingles [Jul 1 06]
Wait Times - The Made-In-Ontario Solution [May 13 06]
They are not served who only stand and wait [Apr 28 06]
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