Discussion group on Dying well (part 2 of 2)

Harry van Bommel
The Next City
March 21, 1998

Letters

1.Ian Welsh , Toronto, responds: April 21, 1998

2.Harry van Bommel replies

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Ian Welsh, Toronto, responds: April 21, 1998

I read your article on palliative care and euthanasia with great interest. I am sure you will receive many responses along the lines of the one I am giving. To wit: hospitals do not give adequate pain care. I spent three months in hospital about three years ago. I initially went in for ulcerative colitis, an inflammatory disease of the bowels. The first two weeks were hell. I was given Tylenol Three pills to control the pain. By the end of the first week I was refusing them because they had no effect at all, and I don’t believe in taking medicine if it does no good. I complained, I stifled my screams, I made myself walk to the bathroom every fifteen minutes despite the fact that each time was agony. Towards the end I told the nurses that I needed more pain killers. I would have asked the doctors, but I hardly ever saw them since my main doctor had gone on holiday and the colleague he had left in charge was rarely seen. At the end of those two weeks I came to a day where I so delirious with pain that it was becoming its own anaesthetic. I tried to stop the nurses from touching or moving me in any way. One nurse became concerned and forced some doctors to look at me. They gave me fifteen units of morphine IM, a very powerful dose (IM means injected into a muscle), but it had no effect at all. They then rushed me to surgery and discovered that I had appendicitis as well as ulcerative colitis and an infected IV site. The appendix would have burst in a couple days, surely killing me in the state I was in at the time.

Pain relief was better for the next couple of weeks, then my surgeon returned from his holiday and decided to take me off my painkillers. I told him that there had been other complications. He didn’t listen. Two weeks were enough. There then ensued what I have called the “Great Painkiller War.” My back doctor kept putting me on pain killers, and my surgeon kept taking me off them. I never knew whether I would have enough pain relief or not. At the same time I was suffering from extreme and untreatable nausea, and I couldn’t move due to inflammation in my back. I couldn’t even turn over in bed. The surgeon thought I was faking it, the back doctor knew otherwise and the nurses were divided in opinion. This sort of jockeying went on for almost a month as my condition swayed back and forth due to repeated infections. (I had been on immunosuppressants far too long, leaving me with almost no resistance to infection.)

The “Great Painkiller War” was finally ended by my original doctor (who had handed me over, since my problems were no longer in his area of expertise). I was complaining of symptoms for which no cause had yet been found. He happened to visit and I finally cracked and started crying, telling him what was going on. He immediately wrote in my file that he was in charge of my pain medication, and no matter what the time of day or night he was to be called if they were changed and would change them back immediately. He put himself on the line for me since if I had been faking it he would have lost great face (a couple days later a test came back showing a problem which perfectly matched the symptoms I had described), and I will always be more grateful than I can say. That doctor could ask me for anything and I would not refuse him.

So much for the story. Some comments:

1) It is not my experience that any level of pain can be controlled. Some pain seems to be beyond narcotics.

2) I have been on every anti-nausea medicine my doctor knew of (he is a gastro-ontologist). None of them worked. I don’t know that really severe nausea can be controlled short of unconsciousness.

3) There is no limit to how much pain one can feel. Every time I thought it couldn’t get worse I was proved wrong.

4) Despite that, the key thing about anti-pain medicines is not that they stop you from feeling pain — beyond a certain level they don’t — but rather that they make you not care about it very much.

5) Mental pain is worse than physical. I never used to believe this but some psychotic episodes caused by the medicinal steroids I was on quickly proved it to me.

6) There is a strong moral approbation among many health professionals, including nurses, to using narcotic painkillers. Some nurses expressed this approbation by taking their own sweet time in delivering pain medication. Perversely, of course, this leads to patients asking for the medication before they need it, anticipating, and making the nurse think they really are addicted.

7) The fact that only doctors can prescribe pain medication is a problem. Nurses are very reluctant to disturb doctors, and doctors other than the ones in charge of a patient are very reluctant to prescribe pain killers. Interns, junior and unsure of themselves, who are on call at night, are particularly unwilling to. I have waited for hours suffering unbelievably, because my condition has changed for the worse and my doctors could not be found. Sometimes nurses acted on their own initiative (to my gratitude) but nurses are very reluctant to do so. They can get in a great deal of trouble.

8) I was on morphine or Demerol, injected or intravenously for two and a half months while in the hospital. After leaving I was on powerful morphine pills for about a month. Stopping using them cost me a few nights of sleep when I was about a month out of the hospital. Narcotics soften things but I didn’t find stopping using them all that difficult — especially compared to what the attitude of some doctors and nurses had led me to think. If, however, they had been withdrawn prematurely, I am sure the withdrawal would have been hell.

9) I never asked to be killed since I didn’t want to wind up being treated like a nutcase and I didn’t want to disappoint my main doctor (who saved me from much of the pain, as I described) who was a “fight to the end” sort of guy. I certainly wished for it. I even sincerely prayed for it. I’ve never prayed so hard for anything.

10) The worst thing with pain, is, as you say, loss of control. The other thing is uncertainty. A known quantity of pain can be dealt with. When you never know how much pain you are going to be in from day to day, or even hour to hour . . .

11) About six months later, in a new city, which I had gone to in order to spend my convalescence with my friends, I went to find a new doctor. The first doctor I saw took one look at the reference letters I had to show him (from my various doctors) saw the types of medication I had been on and told me that under no circumstances would he ever put me on any narcotic painkillers. I was so angry I was trembling. The bastard was saying that to “save” me from hypothetical addiction he was willing to let me suffer any level of pain. I would wager money that he had never experienced real pain himself. I walked out immediately. I will never have a doctor who does not meet the criteria of trusting me and being willing to control my pain and suffering if it is humanly possible.

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Harry van Bommel replies

You are right that I have heard, and will continue to hear, far too many stories like yours. Whether it was my own parents, grandfather, or friends with serious illnesses or through stories told to me by people who read my work or talk to me after a presentation, the conclusions you draw are similar. I am not a pain management expert, but I have talked to many. What I have learned is that acute pain and chronic pain are different from terminal pain. There seems to be little literature on how to treat chronic pain effectively. Acute pain seems easier to treat because of its relatively short duration (e.g. after surgery). Terminal pain, likewise, is often easier to treat than chronic pain because its causes are easier to determine (e.g. in end stages of cancer) and the palliative philosophy of pain management gets beyond the myths of addiction, tolerance, and hallucinations that still prevent so many physicians and nurses from believing patients.

You are right that finding the right doctor makes all the difference in the world. You are also right that uncertainty is one of the most debilitating factors in controlling pain when pain management is not consistently done well. Until recently, terminal patients were given pain medication on PRN orders which means they had to experience pain before getting more medication. All this system did was ensure that patients anxiously waited for pain to return before anything was done about it. It was inhumane, in my opinion. Good pain control means getting the right drug, in the right amount, in the right way (usually orally or by suppository), and at the right time (i.e. regularly without pain having to return first). Patients are often given extra medication by their bed in case of “break through” pain so that they do not have to wait for a new medication order. This method is much more civilized and humane. It has not been translated into chronic pain fields as much as it obviously should. There is far too little public and political demand for better pain management of all types of pain and not enough research into improving pain management for all types of pain. It is not “sexy” enough a research project because it does not deal with “curing” something. It is ironic that almost every Canadian suffers pain, swallows some ineffective medication, and continues (until the pain is overwhelming) to assume that this is how it should be.

I hope that you, other readers, other pain suffers, and I can change some of that by being much more vocal in our demands for improvements in pain and symptom control. You cannot heal easily when you suffer overwhelming pain or uncontrolled symptoms like nausea. I don’t have to have a medical degree to figure that out.

Lastly, you are also correct, in my opinion, that mental pain is worse than physical. In my article I mention that about three to five per cent of end-stage cancer pain is very difficult to treat because of emotional or spiritual pain (i.e. mental pain). Sometimes induced sleep for short periods provides the mind enough relief to deal better with all types of pain. It is an imperfect answer for now, but certainly better than unrelieved, overwhelming pain.

Things in medicine only change (e.g. maternity care) when patients demand change; not when doctors initiate change. We need more stories of failure and more stories of how success has been achieved. The difficulty with this issue is that patients with chronic or terminal pain are least likely to stand up for themselves or use any of their remaining emotional energy to make the issue more public and political.

Click here to read the article from part 1

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