In loving, living memory, John Melançon 1928 – 2007
[Background: Walking to a gas station convenience store last Friday, on the way back from a trip, my grandfather tripped on a curb and fell, hitting his knees on the sidewalk and his head on the door. In the emergency room in Connecticut, pain not from the extremely painful immediate fall, but in his back and sides, began following (coincidentally or not) a tetanus shot, according to my mother, who was with him. That is the pain that has not abated. After i met him at the Sagamore bridge around 11pm Friday and brought him back to his home in Wellfleet, he held court until after 1am. The next day he was up for breakfast and on occasion, but tried to sleep away pain the rest of the time. At 10pm Saturday he said he wanted to go to the emergency room, but then decided to try some more rest, to see if he finally felt better. Instead, at 4am Sunday he decided again to go to the emergency room, and too weak to get up again from the kitchen chair and walk out, i got a ride to Hyannis in the front of the ambulance that brought him. My girlfriend Bridget came from Cambridge and picked me up, and my mother and aunt took over at the hospital. After a day of more X-Rays and CAT scans they had nothing but a maybe recent compression fracture in a vertebrae but higher up than where the pain is and some gall stones that probably aren't causing any pain. Sunday night he moved from the ER to the 6th floor, in a beautiful room where i got to stay and watch the sunrise.]
Shortly after Grandpa was first screaming in pain Monday night, I found out the NORML web site, with an announcement on medical marijuana's legalization in Massachusetts, is blocked by policy of Cape Cod Hospital. (Since then, one trusted person who actually has experience with marijuana said it is unlikely to help.) When posting i typed in precisely what Grandpa was saying to me. Those exact words are lost thanks to my poor memory and Twitter's rotten Tweetdeck app. But here is some of what Grandpa was saying, already at 10pm: "This is torture. I want to die."
Every two hours "as needed" they are supposed to provide .5 mig "dilotin" which must actually be Hydromorphone (Dilaudid), based on the online-forum-enshrined words of the information-seekers who came before me.
One problem is those insensitive fools not understanding yet that "as needed" means as often as possible within the bounds of safety-- and then some more.
For a day now, my grandfather has either been drugged up enough to be drowsy and for the most part sleeping, or else in severe pain and lucid and asking to die.
"Why are you doing this to me? You promised."
This is not a sentiment that comes from being drugged or even from the pain in the moment; when not in pain nor hospitalized or anything a month ago and more, on more than one occasion, he expressed the same wish to not be kept alive and in pain. He expressed anger at the slight majority in Massachusetts that voted against his and others' right to die with dignity. He used the same analogy, too, then as now: dogs, animals are treated with more respect, and given sedation and euthenized rather than forced to die in pain.
(Although my memory of that conversation was my honestly saying i am unable to make that promise, and our agreeing it is therefore a good thing i am not his health care proxy. Politically there are a lot of rights i want to fight for before the right to die, and personally i have too much hope in getting better and healthier and having things to live for.)
Threatening suicide will get you to the front of the line in the emergency room, i've heard. It sure should have gotten a scan done on Martin Luther King Jr. day.
"Really, why are you doing this? Why won't you let me die?" he asked again. This is sometime after three a.m.
I finally said: "I love you. I selfishly don't want you to die. But i would follow your wishes if i could. But the point isn't to live like this, but to get better and live well for another good length of time."
He, not i, has reason and evidence on his side. My grandfather has limb-girdle muscular dystrophy and pulmonary fibrosis, with something like a six month prognosis apart from whatever the problem is now. On the other hand, he is installing a wheelchair ramp at his house so these diseases don't take away his ability to live at home.
(I swear even in their computers it's spelled closer to Dilotin than Dilaudid.) The .5 milligrams is actually on the low end of the up to 2 mg dose that the internet says is the usual range for intravenous provision.
I wrote #1 PAIN ABATEMENT on the whiteboard on which they write his RN, CNA, Diet (NCS) and upcoming consults and procedures. Then i went and told the available nurse, and then our nurse, that his state is either basically knocked out from the drugs or clear-headedly awake and requesting to die. They must, i postulated, be able to do more pain management, that this had to be their highest priority until they had an actual diagnosis, even at the risk of his heartbeat or breathing (in short, a quiet death in his sleep).
A little more on the inanity of hospitals...
Paged the doctor twice, she has given no response.
Cannot give Tylenol before 8am without doctor's approval.
Hear her, our nurse for the night, on the phone with the doctor.
"I gave him ... 30 minutes ago and he's still in severe pain.
... oxygen 98, so i turned it down [was at 4 liters or even above]
give him another 1 milligram? OK
patches and Tylenol [yesterday]"
(Now i'm going to complain about the other way; they didn't ask if he still needed it before providing more-- i asked, but he didn't choose to answer me.)
They won't make sure he is sitting in such a way that he is not harming the potentially actively fractured vertebrae but they can come in every day at 5:30am of all times to take more blood, to add to the reams of data they are not acting on?
(Why do hospitals sap people's strength? Well, there's a very literal possible explanation.)
Oh yeah, the supermarket scanners they use to check in with each patient (complete with beep) probably don't help much with someone feeling they're being kept alive for someone else to score points.
And now at 6am Tina from resperatory coming to draw more blood.
"What for?" asked Grandpa (has not asked to be allowed to die since the extra two mg of Dilaudid kicked in.
Which reminds me it's time to remind them he's due for another dose in about ten minutes, if we get it two hours from the last one.
I've put his canula back in five times since about 10pm last night.
"Should his canula go back in?" i ask. Tina looks back at Grandpa: "I didn't take it out. I can put it back in if you want."
If the person from respitory doesn't notice or feel responsibility for his oxygen being in, what, pray tell, is the point of measuring everything?
Now the CNA checking blood pressure. "Are you cold? Do you want a blanket?"
At least she asked about how and if he's gone to the bathroom. (No, of course not-- with two of you here you wouldn't help stand him up to see if we could sit him in a more comfortable position, do you think he's magically levitated himself over to the toilet?
"Do you have to pee?" (This would be their way of offering the bottle.)
"I have to do nothing."
6:17 am. They gave him the half milligram.
Bone scan has been put in for already, and she hopes by 10.
Everyone has looked at and no one removed my pain abatement sign.
Doctor Yosseign (spelling almost certainly far off) comes in, i give the whole spiel about where the pain is coming from, and he's just checking because he thinks when resperatory drew blood, and got weird-looking numbers, that they pulled from a vein instead of an artery. (His oxygen numbers from the machine, rather than the blood test, are at 80s and up to 100 with the 3.5 liters, much higher than he usually has when tested otherwise, on the 2 liter dose he has at home i guess.
They're coming to draw more blood.
Tina: "I'm back."