My grandfather is dying. He has cancer and he has a heart condition. He’s had four heart attacks in the last two years and one stroke. He’s in his late 90’s so he’s already beaten the odds. And some would say “Well he’s had a good run”. And that’s a reasonable thing to say. If you’re not a member of his family who love him. On paper things are dire. In practice he is not doing great but he has all his marbles, wants to do things and wants people to tell him if there is a way he can get better. He wants to get out and do more. That might be an unattainable goal but it’s an important one for him. Yesterday he said to me “I need to go for a walk because I have to strengthen my legs”.
The problem is that trying to get appropriate care, care that takes into account his needs, his likes, dislikes and his abilities has been insanely difficult. There’s a wall we keep running into. And that is a “one size fits all” philosophy. “He has cancer? Heart issues? Late 90’s? Well then he needs very high doses of pain meds and to be in palliative care.” Except he doesn’t, not yet, that time will come but it’s not now. People seem to think that he’s been this way for a long time but it’s really only in the last 2 years that he has lost his independence. He isn’t in a lot of pain. And yet. Doctors keep prescribing him morphine. Not just small doses either but high doses of morphine sulfate. That’s a no fucking around pain killer. Except he’s not in pain so it just makes him dopey and upsets his stomach. And when we dialed it back to “pain management only on request” he got a LOT better. Doctors keep wanting to put him on anti-depressants. They especially want to do that when he is in care. Because for most patients it’s depressing but it’s also good for destroying the libido. Not that he in particular is a problem but some are so why not dose em up? He didn’t like them. And he wasn’t told that he was being prescribed them and neither were we, I only found out when I looked at his chart. He is hard of hearing, you have to yell for him to hear you and his replies are often left of center…but frankly that’s nothing new. And he is still sharp as a tack, but he has his own way of seeing things. Always has. So people don’t try.
Last week we went to his cardiologist. A guy who we keep getting told “is the best” a gerontologist and cardiologists, a rare mix. We went in, talked about my grandfather’s issues and fears, he took his pulse, tapped his back, didn’t even use a stethoscope. Asked how it was going, we said it seemed to be going ok. We asked about his medication and its side effects. He didn’t know, he didn’t know what medication he was on. We asked about prognosis and quality of life. Well…not great. Ok, what can we do? Nothing, ok how can we make him more comfortable? Don’t know? What about his ears? I’m not an ear expert. He literally said “well he’s old, what do you want?” Then we were ushered out. Total time 7mins. Total cost $250. If he’s the best the worst must just put their clients down as soon as they come in the door. I would love to say that’s a terrible one off. But it’s not. I continually have to ask “Why is he on this medication” and often the answer is “Well…that’s just what we do when they get to this age”. And then they get annoyed that I am questioning the system.
And that’s the issue for me. If this were a free service, then fine. But it’s not. This guy, apart from his moral responsibility has a responsibility as a service because we are paying him. Rather a lot.
“Sure…this is all very sad and frustrating…But what the hell does this all have to do with alternative medicine?” I hear you ask.
This is in sharp contrast to an experience I had a month or so ago. When in desperation over my feet I went to an acupuncturist. Now I will be clear, I do not believe that it helped my feet but the guy is an old acquaintance and the experience couldn’t have been in sharper contrast to what my grandfather experienced.
I went in, and we had a nice chat. Simon (for that’s his name) couldn’t have been nicer and I suspect that even if we weren’t old acquaintances it would have been the same. Simon had all the time in the world for me. He wanted to know everything, why was I here, any issues? difficulties etc? I could not imagine him saying to my grandfather “Well your old, what do you want?” he was professional and caring. He talked about the realities of his practice and how there probably was an element of placebo to it.
He made sure I was comfortable, that I knew what was going to happen that I felt looked after. Every single step was explained and nothing was left out. And I’ll be honest I left feeling really good. That feeling didn’t last, but it was there and I felt like I hadn’t wasted my money. In fact, I intend to go back to see if it really can work I just haven’t had time. Now I’m not saying Simon is a quack, on the other hand I’m not saying acupuncture is a cure all that is real. What I am saying is that the quality of service, regardless of the outcome is sharply contrasted to what we get with traditional medicine. So of course people vacillate towards it. Frankly the heart specialist guy did nothing, so it was an insulting waste of time and money for someone to basically tell us to get used to the idea that he was going to die. In that instance I would prefer to have someone talk to my grandfather and make him feel good rather that what happened. And it’s not like these places he’s going to are cheap, cut rate doctors or dodgy nursing homes. My family isn’t poor; these are supposed to be “The best” it makes me terrified for those that don’t get “The best”.
I know I’m biased. I am, and I can’t help but be. But seriously if I am paying money for a service “Well he’s old” isn’t a good enough excuse for it being shit. My money isn’t old. It’s doing fine and your bloody happy to be taking it off me. Do your damn job. I can’t think of another service that I pay for where they still get paid if they don’t do anything and they insult you. I think part of the problem is that people don’t know what they are being paid for. Triage? Yep that do that very well, if there’s an emergency they are good. Medication? Well they can provide that by the truckload. Actual care? Nope not our business.
Except it is. How do I know? Well I spent most of last year writing a Cert IV in Aged Care. I know what you are supposed to do, what you are supposed to know and what you should be doing for a client. The question I get asked the most is “Oh are you a doctor?”. No. I just want decent service for someone who has earned decent service. Ok so maybe there isn’t anything that can be done to increase his longevity and maybe it’s silly to try. Fine. But I refuse to believe that you can’t get simple things like “He likes to have a shave once a day” right. I refuse to believe that he needs ALL this medication. I refuse to believe that he can’t be more comfortable.
So now he’s home and we have hired a home care provider and he seems to be doing a lot better. Because we can monitor everything and this provider only has one client. And obviously they provide a tailored service specifically for him. It’s not perfect because we can’t afford to have someone over all the time and at night. Where either I or my mother take shifts when we can. But it’s better than it was.
And yes now we vet medication. I did a medication audit with his new doctor and we were able to take him off a surprising number of medications. And adjust the dosing as required. (some went up some went down).
So for now things are good. But that’s because we can afford for them to be good.