I don’t post frequently. When I do post, I’ve often thought about what I’m going to say for a long time – days, weeks. The topic sits in my mind like a spiky rock. My mind tumbles it until the remainder is smooth and coherent. Then I post.
But the article I’ve just read has set many many spiky rocks tumbling in my mind and it hurts.
This article, from the UK Times Online, describes a physician who withdrew treatment from two neonates when their conditions were discovered to be terminal. If you’ve read this blog since the days when I went on and on (and on) about end of life issues, advanced directives, and withdrawing treatment on terminal patients, you know that I fully and unabashedly support letting people die. I feel that in the majority of the cases I’ve seen and participated in, the family of the terminally ill patient is unable to let go and thus selfishly allows the patient to go on day after day, week after week – sometimes month after month.
I know it’s hard. It’s so hard to watch. It’s so hard to give up and accept that things will never again be the way they were. It hurts and it’s a horrible decision to have to make, but in some cases, it has to be made.
The physician in question decided in conjunction with the parents to “withdraw treatment” on 2 separate cases of very premature infants – both very sick and not expected to survive.
The infants were taken off life support and morphine was administered.
I’m totally with the good doctor so far. It’s all appropriate.
Death can be really ugly. When someone is removed from life support, it can be heartbreaking to watch. Often, the entire body is motionless except for the breathing motions that the patient makes. It appears as though the patient is gasping for breath (“agonal breathing”). I have always been told and taught that this is a very normal part of death and the patient very likely is not necessarily suffering. The reason is because they are dying and are not typically conscious (I’ve never seen anyone with agonal breathing conscious). Do I know this for sure? I admit it – no. I don’t think anyone does.
So what we do during this withdrawl of life sustaining measures is to give the patient morphine. Morphine suppresses the respiratory drive, relaxes smooth muscle of the body and has a sedative, as well as a pain relieving, effect. We start the morphine before even taking the patient off of life support. Despite getting this drug, some patients still exhibit signs of agonal respirations. If they do, I give them more. It’s (in my experience) widely acceptable to treat the patient’s symptoms, even if that treatment for their apparent suffering causes death. I have never given what I would consider to be a massive dose. I’ve always given small increments, assess the response after a few minutes and go from there.
So back to the babies. It is here that I start to disagree with the good doctor. I have not been in the situation, but it doesn’t take a stretch of one’s imagination to realize that watching your baby die is probably the hardest thing anyone would ever have to go through. It would break my heart and haunt me for the rest of my days to watch my dear sweet baby have agonal respirations. I would advocate for lots and lots of morphine to help alleviate any perceived suffering. Knowing that agonal respirations are normal in dying people does not go very far in comforting one having to watch them.
Apparently, presumably to treat the parent’s discomfort rather than the baby’s, the good doctor administered pancuronium. I found it laughable that the author of the article described it merely as a “muscle relaxant.” Pancuronium is a paralytic agent. Injecting this drug into someone paralyzes them, but does not sedate them. Sometimes we need to paralyze patients in the CCU (to treat them), and we ALWAYS give both a sedative and a pain reliever when this is done. Still… I always feel very uneasy about these patients because I’m never sure that they’re totally sedated. I’m fairly confident that they are, but that’s as far as it goes.
Thus, it makes me almost physically ill to think that those babies might have had one teeny tiny bit of consciousness… and were then paralyzed. I know what I said above – those patients with agonal breathing are likely not conscious. And the babies were getting morphine which would further the case for likely unconsciousness. But it just doesn’t sit right in my mind to actively stop them from breathing. Why couldn’t they just give more morphine? When giving enough morphine to relieve suffering, the purpose is to do just that – relieve suffering. There is a possible side effect of death. That last sentence sounds ridiculous, but the one and only goal is to make the patient more comfortable, not cause death. Giving a paralytic agent leaves no room for any sort of interpretation. If you give pancuronium to someone without respiratory support, you are doing so with the full knowledge that you will kill them.
The kicker quote of the entire article, for me, was that the doctor said that he was giving the baby a drug that “was on the verge of what society finds acceptable.” That sounds iffy at best. If some doctor told me that, I’d feel very uneasy. I mean – there’s experimental (maybe this will work, maybe it won’t) and then there’s socially unacceptable (unethical behavior?) Apparently the parents not only felt quite easy, they “fully supported the doctor’s actions and were grateful to him.” Goody for them, but I just can’t quite get it out of my mind that the “treatment” was done to comfort the parents and not the baby.
I’m sure that when it was not acceptable to give enough morphine to relieve a patient’s suffering, the mere thought of giving “too much” was enough to send spiky rocks in lots of other people’s minds. For all I know, someday giving a paralytic agent to someone having agonal respirations will be the standard of care.
I just might have to pass on taking care of those patients, though. I’m really quite sure that I could never do it. As I said – I didn’t take the time to mull this one over and it won’t surprise me in the least to discover that there are holes in my logic. I just had to get it off my chest.
Adding on – well isn’t this interesting. The Journal of Medical Ethics advocates the rare usage of paralytic to “allow a peaceful and comfortable death.” Sorry. Still can’t wrap my spiky rocked little mind around it. Judy at Tiggers Don’t Jump agrees, perhaps a bit more eloquently, too.
Hat tip to Kevin, MD for the article.